I’m a newbie!!

Hi Flower and welcome to the site. You will find alot of info and support here. I can’t relate to the solumedral, but I can tell you that after my 5 day loading dose last june, I receive 50gm. infusions every 28 days over 5 hours. The tiredness, headache, and “yucky” feeling are pretty common with IVIG. I flat out felt like I had the flu with my loading dose, but with the one day infusions, only a slight headache and tired for a day or two. I’m sure other’s will come on and share different experiences…………..take care, Vicki

Hi Flower – Chronic relapser here. I agree with you your symtoms are mostly to do with the steroids. When I had IVIG over 4 days I was very tired – but one of my symptoms when my CIDP is “active” apart from the loss of sensation and paresis is terminal tiredness.
We are all different and react differntly to the various treatments, I have to say that I have so far refused any treatment with steroids- I guess I have been lucky so far.:D

Welcome Flower, glad that you found us. Have you spoken to your Neuro to find out why you must receive the Solumedrol before each infusion? Perhaps Prednisone tablets would be a better option taken in smaller doses daily, that is what I have been taking for the past 2-1/2 years.

Also to help with the infusions have you taken pre-meds of tylenol and benadryl? I have found that it helps alot with the IVIG hangover. Another thing to do is try to drink lots of water before the infusion, that helps alot with the yucky feelings after.

I recieve my IVIG monthly as most others do also once you are on maintenance doses, and take 5mg Prednisone daily. If I go lower then 5mg I tend to start feeling a relapse.

Best of luck to you, ask lots of questions, we are all here to help. If I can do anything to help feel free to email me anytime [EMAIL=”jerimyschilz@hotmail.com”]jerimyschilz@hotmail.com[/EMAIL]. Take care.

Jerimy

[quote=flower]Hi, i am a 32 y/o felmale currently diagnosed with CIDP. i have had emerging symptoms for the past five years, controlled by anti-seizure medications. however, my neurologist felt strongly toward CIDP. so, an EMG and a lumbar puncture later i have began the course of IVIG. I have completed my five day loading dose one week ago. the results are amazing, i have approx. 75% relief of all symptoms.
i am a registered nurse and i’m fully educated on this disease and auto-immune disorders and an understanding of what the IVIG will do. however, before each infusion i was admistered 1 gram of solu-medrol, a very powerful steroid. here is my delimmia, my body does not react well with steriods and i had no idea how much of an adverse reaction i would have, until after my course of five infusions.
i must say that after the infusions i felt tired, a little bit of a headache and just on overall yucky feeling. however, i have been on an emotional roller coaster, crying uncontrollably and having the feeling of impending doom. this i do believe is from the solu-medrol. i guess i’m wonder how much solu-medrol other receive prior, if any? how far apart typically do treatments become for most? anyone else “freak out” from steroids??
looking forward to responses.[/quote]

Because of the side effects of the loading dose of IVIg I got in 2004 (four days in bed with killer migraine headaches, nausea and vomiting, high fever, aches) I get IV decadron (similar to solumedrol) as prep for each IVIg.

Thanks to the decadron, I get only minimal side effects of IVIg (very mild headache, some body aches) but, when the decadron starts wearing off after about 24 hours, I, too, get that “feeling of doom” and start to think dark thoughts. However, since I can prepare for the inevitable, I cope by watching funny movies on TV and DVD and eating ice cream.

When the tears start I remind myself that they will be over in a couple of days.

I don’t mean to make light of all this–it’s really miserable, but, for me, the trade off seems worth it. Perhaps extra prednisone tablets would be a good substitute for you, as suggested. Worth a try.

I have always recieved 50mg solumedrol and 50mg diphenhydramine (sp?) as pre-meds. headaches are usally due to infusion rate. slower the better. i max at 160mg/hr. also, infrequent, multi-day “blasts” are old school treatment for CIDP. maintenance doses should be single infusions. I have been as frequent as twice weekly (about every 3 days) and am now tapering down to every other week. it’s not as hard on the body and you have a more leveled off, stable amount of IVIG in your body. It’s like so many medications where you have to maintain a therapeutic level in your bloodstream for best results. I still don’t know why so many neurologist don’t get that?

Flower,

Welcome. You will find lots of help on this site.

My question is why did your neurologist start you out with the solumedrol? How could he assume you may have a reaction to IVIG. I have had the 4 day loading doses several times. Since Jan 2006 I have been maintained on IVIG 60Gms every 28 to 30 days, I also take Cellcept 1000mg 2xs per day and Neurotin 900mg 4xs per day. I have never needed any form of steroid treatment prior to the IVIG infusion.

The least amt. of medication you have to take the better esp. when it comes to steroids. Steriods cause all kinds of side effects, like the emotional swings you experienced. Long term effects are especially bad including diabetes and osteoperosis. Of coarse if you are having reactions from the IVIG then you need the steroids but how could your neurologist have anticipated a true reation to the IVIG. Headache, flu like symptoms and tiredness are a normal reactions especially if you are not well hydrated.

Good luck to you, IVIG is a wonderful drug for us CIDPers especially when given on a regular bases and not when symptoms of motor deficits develope like not being able to climb stairs and loss of balance.

Pam K

Hi Flower,

I just finished my first course of IVIG, too! I was asked to simply use Benedryl and Tylenol before my treatments. Sounds like its worth discussing with your doc!

What are the symptoms that you’ve had relief from, if you don’t mind me asking?

Helen

Flower:

Sorry I missed this thread when you first began it.

I had a very similar experience to what you describe. The IVIg worked very well for me, but the steroid caused all kinds of problems. Mine was “Solucortef” (I don’t know how different this is from Solumedrol, if at all). I did have some adverse reactions to the first two brands of IVIg that I took, but the third brand has been the charm. These adverse reactions included a fever and flu-like symptoms nearly every day for about six weeks. Because I am tolerating the new brand so well, I’ve been able to persuade my neurologist to scrap the steroid.

The effects of the Solucortef were predictable, but still awful. I’d feel my heart start racing a few hours after the infusion; any noise or touch would drive me crazy, sleep was nearly impossible and I’d fly off the handle over any little thing. My family couldn’t stand it; and I couldn’t stand being like that. After getting rid of the steroid, I just took Tylenol and Benadryl with the IVIg, but the Benadryl made me drowsy. Now, I usually just take the IVIg. Other than getting tired, I don’t have any ill effects.

I would definitely encourage you to talk seriously with your doctor about discontinuing the steroid.

Brian Sullivan
Burlington, VT

Hi Flower,
My official diagnosis of C.I.D.P. came this past January, from a senior neurologist
who only deals with rare disorders, I had been sent to by my current neurologist, (it turned out that the senior neurologist was my current neurologist teacher is Med School).
But I went through 3 years of hell while the different doctors crossed off the many possible diseases/disorders.
But, last November, before I was admitted to the hospital for one month, they gave me a high-dose steroid treatment. First it was three days of Solu-medrol by I.V. Then it was high-dose prednisone, which was supposed to go one for 3 weeks after that, but ended only after 3 days of it. I went to my doctors office, as I felt like my body want to jump out of it’s skin!
When he saw what I was like, and while being there, I fell to the floor but felt like I constantly had to keep moving, my neurologist quickly put me in a whellchair, and rolled me over to the Emergency Room of the hospital next door. There, they quickly gave me some IV benedryl and sedatives, as apparently my vitals were up as well.
My doctor later told me that I was on a “Prednisone-high”, and they then listed me as being allergic to Prednisone/Solu-Medrol.
I felt so awful on those steroids! I remeber back in the hippy days of the 60’s/70’s, when I would take some speed if I was going to party all night…It made me to constantly move or talk fast, and was actually agravating the problems that it was originally designed to help.
So, I don’t know if you are having these exact same problems, I just know I won’t be going near any more steroids! I hope this helps some…
-KEDASO, in San Diego County