Find patient medical information for Depo-Medrol Injection on WebMD including Ask your doctor how much you can move/use the joint while it is healing. weight loss, nausea, muscle pain, headache, tiredness, dizziness) when this drug is or pharmacist for more details and report any withdrawal reactions right away. Topiramate will not treat a migraine headache once it occurs. If you get a migraine headache, treat it as directed by your doctor (such as by taking pain. I tapered in 20 mg doses (the smallest available dose) over the If you are already taking Lyrica and want to taper off, ask your doctor for a dose .. Good luck everyone and thank you for helping . Back to my point the PRP injections worked and I could run again .. The headache is not even describable.
away headaches “20mg Chill my took thank you.” -- Shots
But no-one informed me of what to look for at the hospital with serious side-effects. They seem to just hope for the best. Thank you all for sharing your valuable experiences and wisdom. I have just been formally with having Stiff Persons Syndrome, although I have been living with it for nigh on 25years. It has been treated with drugs clonazepam and sodium valproate and I have been reasonably stable on this regime.
My Consultant now is asking for me to go onto an IVIg regime and to stop the drugs. The middle of last year I had an 8 hour operation for cancer which required me to go into intensive care for observation purposes, but ended up on a life support machine for a few hours as I was having difficulty in breathing. This is probably a red herring, in this thread, but I've mentioned it - just in case. Your comments are all very negative, which is what I would expect on a site referring to side effects, but is there anyone among you who can offer me any uplifting experience to even out the playing field and help me to come to an informed decision.
Thank you, in advance, for your comments. Yes, most people post here because they are having side effects of IVIG. I still have side effects that last for a few days after infusion - headache, stiffness, joint pain, etc.
It's like getting sick with the flu. Many side effects can be reduced with the same treatments you would take for flu symptoms Tylenol, fluids, Benadryl, etc. I have Chronic Lymphocytic Leukemia which has significantly depleted my B-cells and how they function causing a severely depressed immune system. I used to be completely exhausted every day and I suffered from multiple infections all the time.
I was on constant antibiotics. It got to the point where I couldn't get rid of a urinary tract infection without being on a 20 day course of Cipproflaxen, a very strong antibiotic.
While the side effects can be bothersome, and sometimes overwhelming, the benefits of IVIG far outweigh the negative points. I have had 4 instances of bad reactions with Gammagard since I was dx in I went to the hospital and they had to give me Morphine I had other plans made and asked my nurse if we could go a little faster because I usually tolerate well.
Learned my lesson there! I had the worst migraine from hell.. I was in tears. I did take my Excedrin Migraine too. We probably ran it just a little quicker but not much than usual A slight headache and fairly bad fatigue is the norm for me, pre and post taking of antihistamines, steroids and migraine meds work like a charm for me usually and I thank God for that after seeing what some of you go through, I feel so so sry for you guys! Nothing was helping for the pain with the neck, back and thigh cramps so I took one flexeril muscle relaxant and it helped, enough for me to sleep anyway.
I couldnt take it anymore and knew I wouldnt be able to sleep with the pain anyway, so I took 40 mg. Its still there but tolerable, at least for now. But from what Ive read, I dont think its all that worrisome If I went to the hospital, they would have to do a spinal tap and if they find white cells in my spinal fluid, they will pump me full of anti-biotics and cortisteriods "just in case" while I wait 72 hours for a culture to develop, or not, telling me if its bacterial or viral Aseptic.
If its viral I get sent home. Anti-biotics dont do anything for viral cases anyway! Just more liver and kidney stress for nothing. I saw one article said that everybody has probably had Asceptic Meningitis at one time or another following a flu bug. I just really really dont want to be stuck in a hospital for 3 days if I dont need to. I guess I will go if the pain gets too bad but ugh! Ive asked my regular Md about it a few times and he attributed it to age Im 44 pre menopausal symptoms.
But the hair loss is ridiculous!! My hair strands are everywhere and it looks like a small rodent has died in my shower drain at the end of my shower!
I had alot of hair thank goodness and its long so nobody seems to notice how it is thinning. I am definitely gonna mention it to the makers of Gammagard and to my Specialist!!
Yes to bowel problems also. I now have joint pain in both my elbows that presented a few months ago and is painful whenever I move my arms. I do have to agree with the ppl that say they are better off with the tx even having to deal with the side effects!
I would be in a wheelchair with no use of my feet, legs, arms or hands right now. My disorder was progressing fast but luckily I was dx within 6 mos. It was truly a miracle for me! It seems to me that all we hear from doctors with this tx is drink more water Why dont they infuse IV fluids for a half hour before and a half hour after and also tell us to drink more water?
Seems like it would help alot. I have been on IVIG for five years now and have recently noticed that I am experiencing lower back pain and some joint pain. I am wondering if some of this is related to the IVIG Gammagaurd , or if it is related to the fact that I am getting older 66 now If it is related to the IVIG, does any one have any suggestions for relief?
I feel fortunate that these are the only side effects If in fact they are side effects that I have experienced. It has slowed me down a bit, but not much. I have just discovered this site and believe it will be very helpful to me.
Three years ago I had sepsis induced by pneumonia and was on life support for 9 days. Survival at all was doubtful, loss of kidneys a concern, but I emerged with lung damage. I did have a diagnosis of mild COPD previous to this, but with no symptoms.
During the last and never ending sinus infection for which there was no antibiotic left for me due to allergic reactions or having become resistant, I was put on a pic line for 3 weeks. During that time I asked to have my blood checked to see if I had any immunities. I had my first infusion a week ago with some fairly mild side effects of headache, body aches, and extreme fatique.
I am caught between 2 worlds as I also see a homeopath who has tried to build my immune system in a more natural way I guess my question and I do not really understand, is what is actually happening inside the body during and after an infusion.
Are the side effects because the antibodies are fighting against weaknesses? I keep reading everything I can get my hands on, but never arrive at a simple explanation of what is happening. It would seem a toxic situation is produced. I am a 68 year old woman who up until 3 years ago could do anything!
I had a headache that was tolerable I premedicated with zantac and zyrtec plus lots of fluids. I find myself with very bad chills and joint pain and fatigue still a week after the infusion. Noted, I was just diagnosed with another sinus infection yesterday and started small dose of prednisone and amoxycillin the infection never really goes away. I can't tell if I am sick because of the infection or still having side effects from the infusion. The pain in my joints is new. I am better than I was yesterday, but trying to tease apart what is caused by what is nuts.
My doctor said side effects from an infusion should be over within 72 hours. Yet I have read here that some of you are sick for much longer than that. Also, can someone please tell me how the infusions have helped them? I am a bit in the wilderness here. Thanks for any information any of you may shed on this. But at least I know why I get all these blasted sinus infections that leave me as knocked out.
My dr says that for me, the infusions are "just a bandaid" and by stopping eventually pneumonia or something simular will "take me out". God knows everything and is in control. Hi, try 2 weeks of being super sick after an IV! I would take it. My first 2 infusions with Gammaguard were great. I do saline, Benadryl, and Tylenol. My reactions happen that night but really kick in 72 hours in. This time, I broke out in a full body rash all over, super high blood pressure, heart rate of and this is a week after the IVIG.
I was so excited for this diagnosis of CVID. Now I am scratching my head. I am going to try a more experienced immuno but I am nervous with this treatment. So far, I have had no benefits of feeling better.
I feel much worse and I almost feel poisoned by it. My fibro pain goes nuts from the Gammaguard. The 3rd infusion, I had to be put on prednisone for 4 days due to rash and pain. Yesterday, my rash was biopsies. This is just not right.
I want this posted so that if others don't do well on IVIG, they know they are not alone. It's very hard and scary. Hi Holly Could you tell me what dose you had and what the flow rate was when you had a reaction 72hours later thanks Karen.
Hi Karen, it was run slowly. Only received 18 grams due to side effects. I've been reading posts and thought I would join in. Tomorrow will be my 18th treatment. I do subQ once a wk. Best way I can describe it is a general feeling of being unwell. From Wed-Sun it varies. One wk I may feel good, the next I can hardly get around.
I especially am having pain in my hip and ankles. Don't know if this is related to the Hizentra or a totally different problem. I have copd never smoked, asthma, cfs, fibromyalgia, chronic pancreatitis, erosive esophagitis. Had no idea of my deficiency until Nov. Do any of you feel strange, thinking about so many people's blood products being in your body?
I try to not look too far ahead, thinking I have to do this the rest of my life. I too have had periods of denial, anxiety. Thanks everyone for being open about your experiences and for listening to me. Hi, all-- Like a lot of posters, I'm so grateful to have found this blog.
I've had four infusions so far, beginning about a year after I was diagnosed with SLL small b-cell lymphocytic lymphoma , which is apparently an 'indolent' form of lymphoma that is more common in people with auto-immune issues. I have MS, fibromyalgia, asthma, diabetes, and chronic sinus infections, so I guess I was a sitting duck. I don't have terrible side effects from the infusions--though I might not notice them if they did, since they're so similar to fibro symptoms anyway!
I can't stand the thought of losing my hair. I was on the verge of dying it white and black, to make the dull salt and pepper a bit more interesting, but now I don't dare. I know it's not serious, but there's very little left of my body to like or enjoy; I can't go out for walks or do much of anything. I'd be so pleased even to lessen the hair loss, if I could. In the meantime, many thanks, and lots of good luck wishes to everyone. Diagnosed with chronic lymphocytic leukemia in and started Rituxan monthly infusions in No side effects noted.
In December I developed bronchitis that went into pneumonia. Thought I was having heart attack but ended up with lower lobe surgically removed.
Doctors decided that Rituxan treatment had killed bad cells and good cells so could no longer use. I'm taking IVIG monthly and first 15 days after infusion my hair falls out and texture is awful. What should I do???? I haven't had any colds, infections since having IVIG so I know it is helping my body, but would like to get my hair back! Hi, new to the forum but not to IVIG.
Has anyone had problems with severe upper extremity flushing? My neck and face turn bright red and my skin gets hot.
It normally happens at night. I am thinking it might be the flow rate which starts out at 60 and ends at I get premeds, solumedrol, Tylenol and Benadryl. Hi all, what a miracle to find this website. I thought my hair loss was related to IVIG but could not find anything about it on the medical sites. It is a small complaint compared to how much better I feel. I was sick all the time I was on antibiotics times a year for several years, along with massive doses of prednisone for weeks at a time just trying to get my asthma under control.
It's like a miracle. I sometimes have headaches and fatigue, but rarely am down for more than a day. I feel very fortunate. I take benadryl and Tylenol 30 minutes before IV. And I sleep most of the treatment. I get treatments every 28 days and feel so blessed my doctor diagnosed my condition. God bless you all. I am about to have my first IVIG Infusion to possibly control my hemolytic anemia, as steroids had no effect.
I have a pretty competent nurse and don't have as many side effects as I've seen posted here. My biggest issue is fatigue. I'm just wore out all the time and never feel full of energy. For the first few days it feels like I'm stuck to the pillow in the morning. Then I'm just tired all day. I have some pain, but that's from the CIDP.
I take tramadol and that just makes me unable to sleep at night. Which is funny because I'm so damn tired all the time. It's is effecting my work and personal life. I can't exercise and even doing stuff around the house is exhausting. Is there any way to counteract the fatigue? In tired of being tired. Like Mike, I have a very competent nursing staff at the "infusion center" where I receive my infusions. I feel I have been very fortunate having been diagnosed with CVID when I was 60 years old not 10 years old as a friend's granddaughter and starting treatment within 45 days after confirmation of the diagnosis by Mayo and CDC.
But, also like Mike the IG fatigue has haunted me. I don't seem to have many of the other side effects, some joint discomfort and a bit of GI issues, but it is the fatigue that is the hardest thing for me. I am a very active person and have been in good health excepting sinus issues that triggered my diagnosis right up to my diagnosis. I am a swimmer and have been for 25 years. I continue this exercise, but I have cut back on the time in the water and the level of my exertion. I remain very active and the fatigue is difficult to deal with.
It has effected my voice I have been a singer nearly all of my life and I have had to step back from most of my solo work as I now sound like I am singing at three in the morning from a local bar, hoarse and limited range. I guess as we get older we all have health issues of some sort and this one is mine. I am also tired all the time which is greatly affecting my job, am out sick alot. My immunologist does nit believe me, that the infusions make me tired and my employer is giving me a hardtime even though I am on fmla, she wants me to get disability but cannot if my doctor won't help me.
I also had hair loss and alot of joint pain, my doctor still does not believe infusions cause any of this. Had my first infusion yesterday. It made me tired right away and I slept through the infusion process. Once I got home I had a bad headache, but it did not restrict activity.
I took 2-two hour naps and slept through the night. Normal activity today, felling ok. I have just recently started my first transfusion of IVIG for retinal degeneration and posterior uveitis. I had the the infusions for three days 3hours per day and did not know what to expect, but my god the migraines are intense! I have also had stiffness in the neck my head also feels too heavy, so have had to lie down a lot , sensitivity to light, aching muscles and very tired for at least three days afterwards.
Thankfully I did not experience some of the other adverse side effects. Has anybody else had this treatment for visual problems like myself? Would love to hear how this has benefitted you or not. A young relative is scheduled to start infusions shortly, not sure what kind. This child is 8 and has more energy than any child I have ever seen.
He plays hard all day and is extremely active. He is small for his age, but was very premature at birth, weighing only 1 lb. Plus there are very short people in his family on both sides. Do any of you posting here know a young child who has had these infusions and how the treatments worked for them?
How they handled the side affects? I am really scared for this little one, especially after reading all the comments on here. We have friends who have a now 13 year old granddaughter who was diagnosed with CVID when she was eight years old. She also has struggled with fatigue and recently began home schooling as she was susceptible to the various illnesses at her school. She is a delightful young woman, bright and very positive, and an inspiration to all of us who know her.
Her grandparents purchased a small about the size of a match box air purifier for her that she wears around her neck when she is going out among many people. Seems to be working for her. Remember, side effects vary a great deal from person to person.
Best of luck with your little friend. Saundra M Palmer, Thank God for you posting what you did. Six weeks ago I has thick long hair. Today, I almost have none. I'm 44 years old and was just diagnosed with PIDD. Hizentra was prescribed and I did 5 weeks of it.
I started having joint pain and muscle stiffness, so my doctor has stopped it two weeks ago. I'm hoping my levels will stay normal Praying that I do not have to go back on it but she says more than likely I will.
You are right- it's so depressing to lose your hair. It's discouraging when your doctors say that it isn't likely that the treatment is causing it when I really believe it is the cause. I feel blessed to have read your post. I believe I have a sensitivity to IGA and have had a severe rxn to multiple meds.
Face numbness and exteremity numbness and weakness, increased heart rate and anxiety. This has been going on for almost two weeks. Does anyone know how long it will last? My doctor believes I should be over it now but I am still experienceing it.
I am taking benedryl and it offers some relief. It is making me crazy with worry. I am just scared which doesn't help my aniexty. I have CVID and was diagnosed a year ago. I lived my whole life with infection after infection on steroids constantly to the point I have Avascular necrosis in both knees. I started IVIG therapy a year ago and I to have bad headaches, tired, ache, chills, fever just exhausted and sleep that night of infusion is the worst and next day kinda blah by the third day I am usually back to normal.
One time it lasted longer, I find if I am fighting the start of an infection and receive my therapy I can't fight it and need antibiotics post infusion than better. I premedicate three days before with claritin and tylenol and do the same 4 days post infusion.
I think it has helped some. Even with my symptoms receiving the IVIG infusions is the best thing that has ever happened I am only sick maybe once a month or every other month not every day or week of my life.
I have accepted that three days of feeling horrible for the rest of the month to feel great is all worth it!! The reason we have such symptoms are our bodies just are overwhelmed we have no immunity and are receiving a large immune response in one dose its alot for our bodies to react to but thank goodness so many people in the world donate so that we can have as normal as a life as possible. I have a very young daughter that has an even worse immune deficiency than I do and yes some day she will need similar treatments and if these treatments stop her from being ill evey day with an infection and stop her from having constant steroids that could lead her to AVN of her hip and knees and need a total hip or knee replacement before age 50 like me than it is all worth it!
I hope all the continued research will find a better cure for her diagnosis but if not I know from my experiences how to prepare her and help her through her journey of IVIG! To everyone out there with symptoms remember how bad it can be without this medicine and if it helps us live a longer happier life I am appreciative! Four years ago I had pneumonia and did not know it, and it went to Sepsis.
I woke up one morning unable to breathe, and somehow called I spent the next 10 days in ICU on a ventilator.
Attempts to take me off, were unsuccessful, and it was thought I would be in a ventilator care facility the rest of my life or loose organ by organ beginning with the kidneys and be on dialysis. None of that happened. I continued to have upper respiratory infections that seemed to be sinus related. Long story, but at one point when I was on a pic line daily for 3 weeks because I had become resistant to all the available oral antibiotics, I asked to have my blood drawn to see if I had any immune system.
Sure enough, ion big trouble! I began IVIG 6 months ago, and have not had an upper respiratory infection nor a sinus infection since. I did miss my infusion by a week this month due to a fall and dealing with a fracture, and I found in being a week late, I had more side effect Typically, I am tired the day of the infusion, and a bit the following day, and also the few days before I am due in again.
I cannot believe the cost of these infusions, and am so blessed to have insurance that covers this.
I feel the small side effects I experience are small compared to the damage more upper respiratory infections create for my lungs. At first I just had the normal redness and swelling at the infusion sites, and mild headaches as well as some muscle pain that was relieved with analgesics. Now one year later I am having severe muscle pain and have been going to Physio weekly following the infusion and having acupuncture to try and relieve the muscle trigger points that appear to spasm and get bound down and even attach to the ribs.
Fatigue is also a huge factor but I am trying to exercise every morning, to see if this will help. On a positive note, I did take all my supplies on a cruise in Europe and did two SCIG infusions which worked out so well. Having said that, the side effects are beginning to outweigh the benefits. It would be great to hear from anyone who has had a similar experience with muscle pain.
New to all this. My question concerns insurance payments since I have not received any definitive information yet. I know plans greatly differ, but does anyone know if these treatments are covered by health insurance for PID? After having suffered through an entire year of chronic respiratory infections and seeing numerous doctors most of whom were idiots someone finally figured out that the infections were the product of an immunoglobulen G deficiency.
Not a generalized deficiency but a deficiency in two sub classes. Many doctors especially oncologists have no idea that you can display a normal G panel while actually having no measurable levels of one or more of the four G sub classes. An oncologist finally confirmed that I had multiple myeloma.
It is likely that the myeloma caused the I-G deficiency. I am now spacing the IVIGs at around 5 weeks. I wash my hands a lot and I am getting by OK avoiding the infections. Unfortunately for the first year or so of taking the infusions I suffered reactions that were possibly worse than the respiratory infections.
These symptoms commenced around 24 hours after the infusion and lasted approximately days. This made my life miserable. My doctors had no suggestions. So I tried the following regimen: Small sample size but the results are manifest and not coincidental. These infusions are now bearable. I hope my report here helps others. My rate of infusion has always been very high since I had very little to no side effects. I don't take any premedication. The last 3 months I have been getting extreme upper abdominal pain and nausea- getting worse each month.
Has anyone else gotten this side effect after prolonged IVIG infusions? What do you do to avoid it? I really don't want to slow down rate since it already takes 4 hours.
I told my docs, and they switched my brand from Octogam to Privigen, and the hair loss stopped. I was a bit more tired and achy with the Privigen, but it was worth it. At the same time, I started making deep conditioner and other hair care products from organic fruit and veg, and that seems to help, too.
My scalp is still very irritated--I tried one store-bought hair care product and was left after a single use with open, bleeding cracks in my scalp--but it's so so much better than it was.
If you want to follow that route, there are lots of great recipes on youtube and elsewhere for how to make stuff. I would strongly urge anyone with hair loss problems to change product AND to start making your own hair care products whenever possible. I was diagnosed with fibromyalgia in and in I began to have a lot of G.
My first two infusions were done through a private immunologist with the drug Carimmune which had to be infused at a very slow rate due to my history of side effects from synthetic drugs. The first infusion was nine hours and the second was six. When I transferred insurances to my husbands policy with Kaiser since I'm now on disability since January, my new immunologist was shocked to find out that Carimmune was still being used since it was taken off the market two years ago for causing kidney failure.
Unfortunately I did not premedicate which may have contributed to my severe reaction when the flow rate exceeded When it was increased to I started to experience low back pain that became worse and spread from my tailbone to the back of my head to where I couldn't breathe and I was in a constant severe pain from the muscle spasms. I was then given an IV dose of Benadryl which rendered me inmobile and I was taken off the infusion for two hours until my symptoms subsided.
It's now three days later and I still have a pounding headache, fatigue, joint pain and diarrhea. After my second infusion the next day I came down with bronchitis and it took a full month for me to recover. I do want to acknowledge after the first infusion after four days of experiencing the same side effects I did start to feel better and then the next three weeks were the best I've felt in about 10 years!
I'm hopeful that the IVIG therapy will help me lead a more healthier normal life however as a home health PT working with high-risk population of the elderly constantly being exposed to pneumonia I am being forced to go on disability because I am now deemed "unemployable" as well as doctors not being able to help with the chronic low back and hip pain. I'm not ready to give up at age 55 so I'm looking forward to this blog and other readers helpful suggestions to make this life-saving treatment more tolerable.
I was recently diagnosed with multifocal motor neuropathy. I received my first IVIG tx 2 weeks ago. No side effects but elevated sgot and sgpt 1 week after tx. Has anyone had issues with liver enzymes elevating with these treatments?
I have been on IGG sub Q in home infusions for almost two years. My infusions have been a learning experience. I first tried the one dose infusion per month over 6 hours at the Infusion center and the side effects were to much for me even with pre-medications of Benadryl and Tylenol I still had flue like symptoms and migraines.
Now that I am on sub Q I do my infusions at home twice a week for an hour and a half 25 g each treatment. I still get flue like symptoms but they are tolerable. Just had my first dose of hizentra for CVID. I feel horrible day after. Does it get better?
I have read comments and would like to never do it again. I have had peripheral neuropathy for about ten years. The cause is unknown. It is not caused by lupus, diabetes or other autoimmune disorder.
I am missing IGG subclass 3, so my immunologist suggested ivig. I had several infusions of 30 grams, then one of 60 and one of I weigh 50 kg. They want to increase it to next time. Should I be concerned? I thought that the highest recommended dose was 2 grams per kg of weight. Gammagard Liquid is approved in the treatment of multifocal motor neuropathy with a dosing protocol of 0.
Not all physicians follow the FDA approved treatment protocols, rather they may use them as a guide to start therapy, and then titrate the dose either up or down based on how the patient responds to therapy. I'm with ivig for one year I stopped using it for taking other medicine for another try I was 1 month without ivig and I took it last time yesterday and I started to have join pain and muscles but after I stopped the ivig 1 month I had hair loss and with ivig I had growth hair soooo the hair loss is from ivig or what???????
This comes up occasionally. We have some patients who report hair loss, but at the same time, IVIg is sometimes used to treat hairloss alopecia areata.
I haven't been able to find anything concrete about IVIg and hair loss. I would recommend speaking with your physician. I had hairloss at the beginning but I believe it was from my disorder not the treatment- I had medium length hair and went to the hairdresser and just ask her to cut it off short- I started taking vitamins and with the treatments it has came back healthy again-So sorry you guys going thru some of the same, but it is nice to see I'm not alone because sometimes I feel it!
I guess the facial disfigurement makes it worse, but people don't seem to understand- it's ok, I know it could always be worse, but I miss smiling! I also miss being active- about the time I get to feeling back to normal it's time for another treatment- but overall it has helped me tremendously!
I've been doing SCIG for about four months I was at 65mil a week I started having eye problems my Doctor cut me back to 50 mil this week I felt better the day after too!
I hope it takes care of light sensitivity and sore eyes. I think it may be because I was getting too big of dose. I was diagnosed when I was 9 years old, and I've been recieving the Gammunex for the last 13 years.
I receive 60g's at a rate of So it normally only takes me an hour and a half per infusion. Which I recieve every 4 weeks I've never experienced any side effects, such as headaches, nausea, pain, swelling Normally the week before my infusion I start to feel weak and I find myself dragging around But within 24 hours of getting it I feel amazing again. I'm sorry to hear that people are having negative effects from the ivig. However my experience since I was a child had been great.
Overall I truly feel like this is helping me. I was one week post op from cataract surgery. Five days later I now have been diagnosed with Retinal Skesis. Separation of layers of the retina. There is no treatment for it. My cataract surgeon had dilated me before surgery and didn't say there was a problem with my retina. Does anyone know if this is possibly triggered by the Hizentra? I have refused to do another treatment until I find out if the Hizentra can cause it.
Would appreciate any info you can give me. I was only supposed to get 4 grams a week, but this just seems to weird it occurred so soon after the first treatment. When ai was first diagnosed in , I had a great job w a great benefits package from a major Corporation. After 2 visits to ICU, we determined how often I needed infusions and I had a home health service allowing me to do my two-day infusions at home.
I was not able to return to work so was terminated a year later. I much prefer this however, over an infusion center due to my compromised immune system. I had severe headache following my first infusion of IVIG to prevent rejection following a double lung transplant. I had pre-hydrated and taken benadryl and tylenol to no avail. My friend suggested I try drinking coconut water. I prehydrate with coconut water and high PH water for 2 days before, during and after and have experienced no headache.
I have experienced weight gain of around 7pounds the week after infusion. I am beem taking IVIG for 3 years. The nurses said they don't cause side effects the day after. I glad I found this website now at least I don't feel like I am crazy or hypocondriac!
I use ice on back of neck usually so weak it is hard to do anything for a couple days. I have very low igg and practically a non exsistance iga. I still got pnemonia once this past winter and have chronic sinus infections about every other month. Glad I am not alone! I have been receiving Gamunex C for about 15 years now. I was diagnosed with PAN Vasculitis years ago. I have never experienced any major side effects until recently. My last two infusions have really set me back.
Each infusion has put me down for almost 2 weeks. High BP, neck soreness, tons of head pressure, real hot on inside of body and chilled on outside but no fever, cramping in my legs, lightheaded, etc. Has anyone ever experienced this problem after having so many infusions with no problems. May I also say that these problems have started after the company that sends my infusions changed company names.
Any info is greatly appreciated. I have been on ivig for 5 years my nurse is amazing really watches how I am and what I need I noticed when I slow down or stop for 30 min to hour and hydrate with iv fluids and take headache shot imitrex or maxalt and pre med and benedrly iv and Zofran and Tylenol Through my treatment I do ok , it's the third day I have headaches if rate is increased it is your body remember everyone is different try a home care service I use maxim amazing people they care about a patient!
I ask for slow down and watch rate and infusion time. I've used ice packs and heated blanket for cramps and life water has made a change high electrolytes and watch diet and better and les side affects after treatment. Also I found on amazon migraine patches they cool ur head and take care of headaches they work 8 hours I use 2 boxes and cryopack ice packs for day and this all helps please try side affects are bad but when they get worse try Phenergan and go to sleep!
I have been wondering if anyone else have been dealing with being called an addict because of the pain I have been dealing with since I receive ivig every three weeks. I get sever headaches joint pain to were I can't walk and aseptic Meningitis from the ivig.
It is so hard for me to get the doctors to understand where I am coming from on any of this that I just wish I knew how to make them understand where I am coming from. Does anyone know how I feel or is having the same problems as me.
I have myasthenia Gravis and that is why I have to receive ivig. I have been receiving this for ten years and the past year and a half my headaches have been getting worse and worse as I said before I have been called a addict and everything else because the pain medicine doesn't help really. What helps these headaches and why are my systems getting worse. I have had several patients who developed headaches during and after infusion.
The key to decreasing those side effects is slowing down the infusion before the headache gets worse. You can call the office who is supplying the nurse and tell them you'd like a nurse who is willing to take the time to deliver the med slower.
You shouldn't have to put up with headaches just because your nurse is rushed. Most infusion company nurses have schedules that have pt's whose infusions run 1 to 2 hours, so they're going from pt to pt.
A few nurses prefer be less mobile and cater to the pt's who have longer infusions. Hi there Just had my first ivig for low platelets. I have had zero energy before and very weak and now I still have no energy, weak, mild flu symptoms. I'm 45 and my job is outside. Needless to say that it isn't working out so well.
How long will this last? Hello Scott, It is normal to have low energy levels and flu like symptoms after an infusion. You need to make sure you get plenty of rest and drink plenty of fluids before and after the infusion. Is there things I should do or not do in between so I can have at least 2 good weeks? Do I push myself to do as much as possible or do things not too strenuous? Prescribed 5 day home infusions once a month for the duration of the year.
I kept telling the nurse I was getting to dehydrated, even though I was drinking continuously, I had to urinate every minutes. She said sometimes the Dr. The next round In April was horrible. Again each day the rate had to be slowed down more everyday till it was at the lowest rate on the final day. Again I was told that sometimes the Dr. Tuesday it took all I could muster to get myself together, don't ask me how I did it.
Aware so I would have the IV fluids I needed. I totally believe the hair fall is from the IVIG. IVIG was the only change. Sierra, Sometimes our docs forget we have more than one medical problem going on that can be affected by ivig.
If you already were a migraine suffered you will have migraines after an infusion. And it might not be immediately. It might be days afterwards. If you have any type of autoimmune disease, it will respond in some way. Hashimoto's Disease will go a little wonky. So you have to think in terms of a selection of meds that can help you through. If your migraine med didn't work and you've taken all you can take, ask your Neurologist what to do then.
Not necessarily a pain med. Mine knows I take neurontin in that situation and he's all for it. He doesn't know why it works after the migraine med, but he's not surprised. So it was in my grab bag of non-narcotic treatments. After all, their licenses and practices depend on them following prescribing guidelines. If we help them they'll help us. I know sometimes it seems almost hopeless.
I'm having a bad reaction myself right now. But talking to you seemed to make me feel a little better. So thanks for sharing your story. It lets us know we're not alone out here. I am sitting outside today enjoying a beautiful day, because, if indoors I would have taken another nap. Instead I pushed through drowsiness and boredom. This is my third week off work since my August 7th sub q of Hizentra.
I ended up in the emergency room with adverse reactions of migraine, vomiting, vertigo, dizziness, left side weakness and off balance. Three doctor visits later including MRI of my brain and it still points back to treatment.
I have history of migraines that we pre treat before and after infusion. Almost week past infusion day and I can tell even though there are still some residual effects goino on. My IgG levels are up from ten months ago. How do I get past the dread of how my body will react from a medication I apparently need. IVIG infusion in January took about seven hours to complete, less than 12 hours I had severe reactions, put me outta work for seven days and ER visit gone bad.
June 12th was a bad episode. Three times my body has been rebelled severely and I'm torn. This is my first time here. I had my infusion on Friday and all seemed to go well until I entered the car. Fell asleep for over an hour and was then able to go home. This is the second product this happened to me on. The first was Gammaguard and this was Gammaked. Anyone have similar experiences? Hi, Had my first at home subQ Hizentra last week. Had same experience as Scott above, dead tired, fluish, weak, GI disturbance, achy, insomnia, ect.
All symptoms I live with daily, just worse. Lasted 5 days but really took its toll. I am wondering if I am going to do this if I should just do IVIG once monthly and get it over with rather than weekly. I never knew there are two types of anaphylaxis reactions. I had my infusion last week and I wanted to get more information on it. I'm glad I stopped by. Hey guys, I've got a question about the fevers. Does benadryl help with fevers caused by the infusions?
The long story is my husband is 33 and has CVID, he just had his first infusion 5 days ago on Wednesday but went through a bad reaction that put him in the ER the same day uncontrollable fever, vomiting, exhaustion, extremely pale, high heart rate, and sever full body aches.
After all the medications they gave him to stabilize him, he was released that night. Thursday he felt fine but his mother who was with us while he was in the hospital was ill and bold faced lied to us about it and instead called up crying Thursday to explain she had a fever and pnumonia, which my husband was hospitalized with for a week two months ago and is what hits him the hardest out of all infections, needless to say I'm beyond pissed Because of his CVID, he hasn't been able to fully get rid of the pnumonia from two months ago and still has residual symptoms such as wheezing, rattling in the lungs, coughing up green gunk, and exhaustion.
The problem we are having now is on top of those symptoms that he's had for two months, we've been fighting a fever since Friday. It's been controllable and hasn't gotten higher that , he also gets bouts of nausia and migraines that go away with Excedrin.
We did a 50 mg benadry test and it had no effect. I'm not sure if this means we are fighting a fever from infection or if it's a reaction from the infusions. We do have a doctors appointment Monday, but any help would be appreciated.
Hello, I have an autoimmune condition called Ankylosing Spondilitis, it's an inflammatory degenerative disease of the joints. My doctor recently prescribed Hizentra, an Immuno Gobuoin therapy. I was wondering if anyone out there is using this type of therapy for autoimmune conditions instead of a weakened immune system. I am in a lot of pain and terrified. I'm getting a lot of conflicting messages about treating AS with Hizentra. There is a good Chance that the fever is due to infection, since the infusion was 5 days ago.
Any infusion related fevers should have subsided by now. Tylenol, aspirin, or ibuprofen are all good for reducing fevers, but if there is concern of infection, I would recommend a follow up appointment with the physician as soon as possible. Hi Crystal, I too am taking it for auto immune disease So far I've only had two infusions. I haven't noticed physical relief in symptoms yet but my blood work shows improvement. My first infusion was horrible.
I barely finished Before they close down for day. My husband had to drive me home. I slept for 15hrs straight. Had horrible headaches and felt like I had flu for 4 days and had lupus like rash on my face. I made it through infusion. Had one headache and was only mildly tired.
All because they slowed rate and because I had pizza night before I'm noticing hair loss. A bit nervous as I don't know what to expect. I'm glad I found this site. I did learn from here to stay hydrated so I'm drinking lots of water. I will report on my experiences. Anyone experience with weekly 0. Normally for my disease the treatment is 0.
I have to get it every week now, for years, but I am afraid of the possible thrombotic side effects, like heart-attack or stroke. Isn't the way ivig makes your blood hyperviscosis a cummulative one, so the more often you get it, the thicker the blood? Does anyone get this high dose too?
Should I watch my diet? I like to eat something fat in time to time, but now I think I shouldn't. I was diagnosed with dermatomyositis a year ago. I had a bad flare in December with Cks peaking at Your chest may feel tight or 'heavy' after taking sumatriptan. These sensations do not usually last for long, but if they continue or become intense, do not take any more sumatriptan and let your doctor know as soon as possible.
Other side-effects may occur, but they are generally mild and do not last for long. In people with migraine , it is thought that some chemicals in the brain increase in activity and as a result parts of the brain then send out confused signals which result in the symptoms of headache and sickness.
Why people with migraine should develop these chemical changes is not clear. Many migraine attacks occur for no apparent reason, but for some people there may be things which trigger an attack, like certain foods or drinks. Cluster headaches consist of attacks of severe one-sided pain in the head.
Typically, a number of attacks will occur over several weeks and then pass. It may then be weeks, months or years until the next cluster of headaches develops. Sumatriptan belongs to a class of medicines known as 5HT 1 -receptor agonists. They are also known simply as triptans. Triptans work by stimulating the receptors of a natural substance in the brain, called serotonin or 5HT.
This eases the symptoms of migraine and cluster headaches. The injection is usually prescribed for people with cluster headaches, whereas the injection, spray or tablets may be prescribed for people with migraines. Some medicines are not suitable for people with certain conditions, and sometimes a medicine may only be used if extra care is taken. For these reasons, before you start taking sumatriptan it is important that your doctor knows:.
Along with their useful effects, most medicines can cause unwanted side-effects although not everyone experiences them. The table below contains some of the most common ones associated with sumatriptan. You will find a full list in the manufacturer's information leaflet supplied with your medicine. The unwanted effects often improve as your body adjusts to the new medicine, but speak with your doctor or pharmacist if any of the following continue or become troublesome.
If you experience any other symptoms that you think may be due to the medicine, speak with your doctor or pharmacist for advice. Never take more than the prescribed dose.
If you suspect that you or someone else might have taken an overdose of this medicine, go to the accident and emergency department of your local hospital. Take the container with you, even if it is empty. This medicine is for you. Never give it to other people even if their condition appears to be the same as yours. If you buy any medicines, check with a pharmacist that they are suitable to take with your other medicines.
If you are having an operation or any dental treatment, tell the person carrying out the treatment which medicines you are taking. Do not keep out-of-date or unwanted medicines. Take them to your local pharmacy which will dispose of them for you.
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And I have a pretty high pain tolerance, as I'm sure most of you do, as we Meanwhile, my migraines were bad as well, with my worst one since last I filled the prescription, which was for one 20 mg tablet three times per day. migraine cycle, but similar to DHE (a rescue intra-muscular injection which I. Cymbalta received an overall rating of 6 out of 10 stars from reviews. So thank you to my Psychiatrist who recommended this. . After being on cymbalta 20 mg for only three months i had to stop. it made me feel i have a migraine, chills and shaking, and i'm crying hysterically from the discomfort and pain. i hate the. Steroid medications can be very effective for migraine headaches that fail conditions who have take steroids daily for months and even years. are willing to accept the risk of long-term side effects of steroids. .. Cap Risek 20 mg . Thank you again for your time/blog as it's given me new hope which is a.