IVIG – Symptoms up and down

I had about 15 treatments of IVIG all when I was in the hospital 2 diff times. I was lucky I never had any reaction but they always gave me benedryl and tylenol before they started my IV. I was one of the few people that IVIG did not help. Well it helped some but I would always just stay at a certian point.
During my last relaspe my dr tried plama exchange–5 treatments. I saw dramtic improvement on PE after the 3rd one–went from a walker to a cane. I ended up having a total of 7 PE in the hosp and now I have one every week. You can have reactions from the plasma like ivig so I get premedicated with benedryl and tylenol. I have noticed sometimes I feel achey all over the next day so I usually just rest.
Good Luck
MJ

The flu-like symptoms are very common side effects. A few ways to combat them are to make sure that you are very well hydrated before, during & after your infusion. I usually recommend starting to drink more water about 24 hours before your infusion & continuing it until 24 hours after it’s done. Also, getting premedicated with Tylenol or Motrin with Benadryl helps. Some people also get a small dose of steroids to help too. You can continue to medicate for 24 hours after the infusion to ward off the side effects as well.

If the side effects become unbearable then you can try switching IVIG brands. Some people react better to certain brands. Also check to see if you are getting pre-mixed IVIG or if the nurses are mixing it. Some people respond better to the pre-mixed. I’ve also noticed that if my daughter gets more “champagne bubbles” (little teeny tiny bubbles) in her IVIG that she’ll have a rougher ride. IVIG is bubbly anyways so you really have to watch to make sure that you don’t get too many bubbles, especially towards the end of the infusion.

I don’t really think that you go into remission for a few months after taking your IVIG. What happens is that the IVIG has a shelf life & once that wears off then you have the symptoms again. This is important to know because you want to get on a treatment schedule where you can receive an infusion before your symptoms appear again.. The longer you can go without having a relapse the more time your myelin has to repair. The more relapses you have the harder it is for your body to repair.

My daughter is on an every 2 week treatment schedule (down from 9-10 treatments a MONTH last year) and is doing well with it (KNOCK ON WOOD!). We’re thinking of trying to space her out to once every 3 weeks in January. I want to get past the holiday season before trying anything new.

I hope that helps.
Kelly

I am glad you found this forum it will really help take the worry out of your stressful life knowing you are not the only one with these problems. The main thing is to keep the communication open between you and your doctor and share some of the ideas that others have had sucess with. The only thing I would add is that you make sure you get plenty of rest and don’t over do it that only makes things worse for all of us. Welcome to your new online family. Also contact the foundation and see if there are any local chapters in your area you can contact. Even if it is a liason in a near by state they can be a very big help too. Welcome and Happy Holidays!

[QUOTE=cincycat1]I had about 15 treatments of IVIG all when I was in the hospital 2 diff times. I was lucky I never had any reaction but they always gave me benedryl and tylenol before they started my IV. I was one of the few people that IVIG did not help. Well it helped some but I would always just stay at a certian point.
During my last relaspe my dr tried plama exchange–5 treatments. I saw dramtic improvement on PE after the 3rd one–went from a walker to a cane. I ended up having a total of 7 PE in the hosp and now I have one every week. You can have reactions from the plasma like ivig so I get premedicated with benedryl and tylenol. I have noticed sometimes I feel achey all over the next day so I usually just rest.
Good Luck
MJ[/QUOTE]
I am curious how long has it been since the onset? I had 5 PEs whithin days of onset but nobody ever recommended to have PEs later on. I wonder what experiences others have with PE and how long post onset have they had PEs. Thanks! Good luck cincycat!

Dino,

Were you diagnosed with GBS or CIDP?

Allison, et al;
I was diagnosed with GBS but I wonder whether my diagnosis is correct. I have found the neurologists rather ignorant about GBS and other variants. What are the differences between GBS and CIDP and are there any objective and measurable ways to tell the difference?
I would appreciate any info. Thanks!

The main difference between GBS & CIDP is that with GBS you get better (slowly and may have residuals) and with CIDP you either get better then relapse again or progressively get worse.

In order to determine if you have GBS with residuals or CIDP you should get an EMG done and spinal tap to check for elevated protein.

Some people get inconclusive results from the testing & will try treatment like IVIG. If they get better with the IVIG then relapse again the dr will dx them with CIDP. Do NOT take steroids if you are not sure which disease you have as steroids will make GBS worse.

You can contact your local MDA clinic to see if they have a dr that knows about GBS/CIDP or you can contact your local major medical center like a large university hospital – they should have a decent neurologist on staff.

Good luck.
Kelly

Kelly,
Thank you for the explaination. I must have GBS because I have been getting better slowly (of course) and have never had a relapse. Unfortunately, I have been recovering now for 4 years. Except for having PP and IVIG during the first 3 months, I have not taken any medication. Have been going to therapy (2/wk) for 3 yrs. resulting in small but steady improvements.

Dino

Surely another major difference between GBS & CIDP is the speed of onset. GBS is acute, that is that it usually develops speedily within a few days.

It is perhaps clearer on this quote from the UK GBS Support Group’s CIDP booklet that is on the UK website.[QUOTE]CIDP is closely related to Guillain-Barré syndrome (GBS), which is also due to inflammation of the peripheral nerves. Symptoms experienced by patients are similar, but GBS is a more acute condition in which symptoms appear rapidly over a period of days or a few weeks. GBS patients usually make a spontaneous recovery over a period of weeks or months.

CIDP is a chronic condition and is only distinguished from GBS by virtue of its pattern of progression. In GBS the low point is reached within four weeks whereas in CIDP the initial progressive phase lasts longer, usually much longer.

Some patients with CIDP develop weakness acutely in much the same way as patients with GBS but instead of stabilising and then improving they go on to get worse for several months. This slowly progressive course points to the real diagnosis of CIDP.

[/QUOTE]
Does that help?:)

Ken is right in that most of the time GBS comes on quicker than CIDP. However, the more I’m reading the more I’m finding out that isn’t always an accurate way of determining GBS vs CIDP.

There are so many differences & variants that it’s getting harder to make the determination if it’s GBS or CIDP. I think, for many people, it’s trial and error for awhile before they can even figure out what they have and the best way to treat it.

If you are making progressive without any medication for this long then it’s probably GBS.

Kelly

Ken,

Kelly is correct in saying that its not [I]always[/I] a slow onset for CIDP. There are cases where onset is fast. These cases then go on to do what CIDP ‘normally’ does.
I have just gone back to look at your post and, the last paragraph does say that weakness can be accute much the same as GBS.
[QUOTE]
Some patients with CIDP develop weakness acutely in much the same way as patients with GBS but instead of stabilising and then improving they go on to get worse for several months. This slowly progressive course points to the real diagnosis of CIDP.

[/QUOTE]

Dino,

You seem to have had the right treatment at the right time, unfortunately more IVIg or plasmapharesis will be of no benefit to you – only within those first four weeks.

Dino, in ever so many ways you have been very lucky to have gotten treatment from the onset! Truly, I mean that.
Since you are getting PT 2 times weekly, have the therapists given you any exercises you can do at home? I’d learned to ask my Docs for that, as I find IF I can keep doing some of the simpler exercises with either therabands, therapy hand ball, marbles[for the feet/toes] and balance discs…that I can do more in smaller sets of reps [say, not 3 sets of 20 reps, rather 5 sets of 6 reps-I think that’s how it is put] and that I can more easily do the smaller sets and add on almost daily building up strength without tiring. If the therapists won’t do it without a doctor’s orders, ask your doc for such an order. The more you can do at home to build your strength, the better. Chip Clips are good for finger strength exercises as well.
No matter if it is GBS or CIDP, it’s a long slow and painful recovery, or even maintaining a simple status-quo [not getting worse].
Hang on and keep faith, at times it is all we have. Fight it’s affects on you with your attitude [gonna beat this!] and outlook [gonna improve!]. Either way, this isn’t fun? But giving it all a solid fight can bring benefits… Good thoughts your way.

Hi Rhonda-

I would get flu like symptoms from ivigs,too. I used to get ivigs every 4-6 weeks starting at age five and ending at age 10. There were two reasons I stoped;the flu like symptoms and I unfortunantly become immune to them:( I would get ivigs for 12hrs,hooked up fridays and leave mid sat. I would be tired the rest of saturday,sunday,and then early monday I would start puking every 5-10 mins for like the next ten hours,(that is not an exacteration,lol)a 105degree fever,and a horrible headache for that whole day,and by the evening I would be fine-tired but fine. Also,I was always premedicated with benadryl. The next day I was back to my usual energetic self:)

Just wanted to let you know that you are not the only one to experience flu like symptoms.

[QUOTE=mnsue]Hello- I am new to this forum but have been on IVIG for about 7 months. I have had times of complete remission lasting a couple of months, however it continues to come in milder versions from time to time. I am wondering if others have ups and down with their neurological symptoms while on IVIG?

I also react to IVIG with flu like symptoms. It would last 10 days when I was taking IVIG once a month, so now I take it once every 2 weeks with about 4 days of symptoms. It is hard to tell what is worse, the cure or the illness some days.

I would love to hear others stories. I am wondering if this is normal.

Rhonda[/QUOTE]