Had my first IVIG infusion yesterday...

[gurs]

Ok, I was finally able to have my first IVIG yesterday..boy, its been pretty tough.
I got the Gammagard liquid 30 grams (there were 3 bottles) and we started at 10:15am
and ended around 2:40pm. After the first hour, my joints became painful and itchy, and I was just so out of it. They slowed it down for a time, which seem to help, but the fatigue and sick feeling was nuts. They premedicated me with 50mg of IV Prednisone, and after they gave me a saline infusion that lasted almost 3 hours . I asked the doc to give me the saline to help with the dryness, and I drank tons of water while I was there. Im now having like a super bad flu reaction. My joints are extremely painful. Im hope this goes away in time. Im also wondering if the IVIG was done too fast? any comments ? thanks

Gursie

[Pooh]

Hi Gursie,
Wow! sorry to hear you had such a rough day of it.  I've never had to have these infusions, but I think Irish has and I'm sure she will give you her side of it.  I know she had to change the maker or producer whatever you call those people that make it, one or more times. 

I hope you find a happy medium and this makes you feel better, not worse. 

Pooh

[irish]

gurs, I am so sorry to hear that you are feeling so rotten. Some people do have a lot of flu symptoms and sometimes they get less. It is a very personal thing. If you did the 3 bottles in the 10-2.00 time frame and then had the saline later I would think that it was not given too fast. Usually the first bottle should take the longest and then speed up some on each bottle.

I know that at our infusion center people will premedicate with tylenol, IV benedryl 25 mgm and IV hydrocortisone. I usually got 100 mgm cortisone at the beginning. Since I had the really bad case of hives they give me the 100 when I start and 100 between the 2 and 3 bottle. Keep us updated. Also, did they tell you to drink and to take tylenol????Check with your doc if any questions. Irish

[Tinker]

I'm glad to know this info.  I may be taking plaquenil in the future (?) and I can't take take steroids...they make me wild and nervous, and I can't sleep.  It's such a miserable feeling. 

I do tend to have lots of allergies so not sure I can take IVIG.

My neuro said that she could have me feeling STRONG in 30 min after an IVIG infusion.  Sounds like bull to me now!

Gurs, I hope you feel better soon.  Sorry it was such a rough day.

[irish]

Tinker, I go to a great immunologist and he has a large infusion center. It is true that some people will feel better before the infusion is over. I am one of those who took a long time to show results. I get my IVIG for my Myasthenia gravis and it also helps my low t-cells by keeping my infections less serious.

Also, just because one has a lot of allergies is not a deterent to getting IVIG. It is amazing how the body is made. Anyone who has autoimmune disease can have an allergic reaction at any time as the autoimmune and immune system are very intertwined. The gammaglobulin we receive is made up of blood serum from up to 10,000 people. They have all these really high tech ways of washing and disinfecting the serus and removing things. I think that more people have headaches and flu symptoms than allergic reactions.

IVIG has been done for about 25 years now and they know so much more about it. I can't take any of the heavy duty meds like Imuran or Methotrexate and IVIG is it for me. My mysthenia is better and the people at my infusion center, both nurses, doctors and other patients, have become an important part of my life. My hubby even likes to go with me as we visit with other patients. Irish

[gurs]

Actually, I usually have allergic type reactions with everything, but not this. I also did not get a bad headache, just very achy joints and bad flu like feelings. I did take some tylenol throughout, and was pre-medicated with the IV steriods and saline afterwards. Im not expecting much from this either, basically to help my immune system and possibly calm down my major sjogrens/lupus flaring.
Irish, thanks for your advice...it really helped!! Going to wait a month and go from there.

Gursie

[navydad]

takes me about 7 hours to do 60 grams,, only had one reaction,, that was when they did 120 over two days,, that was insane,, come to think of it,, just about everything that has happened from this darn disease,, has been insane

[irish]

navydad, What is the reason for your IVIG treatment. I am assuming that you are getting it for your neuropathy and your low white cells that cause you to have more infections. Just curious as I don't think it has done a whole lot for my sjogrens. It is hard to tell though because I have been getting it for 2 years and maybe my sjogrens would be worse if I wasn't getting the infusions. Irish

[Tinker]

Thanks , Irish, for the info about the IVIG.  I was a little disappointed when I read the possible side effects.  I've already got a nasty case of fibromyalgia (lots of muscle pain and major fatigue)  and this may make it worse. 

The only reason I am having this muscle biopsy tomorrow is to hopefully make the insurance pay for the IVIG if I need it.  Actually, it will be better if the muscle biopsy is negative, I know.

I'm just playing the waiting game now to meet with the rheummie in Dec.  There are very few rheumatologists here, most don't take my insurance, or aren't taking new patients, and the one I have doesn't treat his SS patients with plaquenil.  I am seeing a worsening of my symptoms....dry, sore , sensitive mouth and I can't eat anything crunchy or it is abrasive to the palate and gums. and fatigue is a killer.  UGH!

I don't know how I am going to deal with this.  If I am this unhealthy now, what's it gonna be like in 5 or 10 yrs?  It's frightening to say the least.  Many of you are much sicker than I am and I'm sorry to vent....I am just afraid.  It would be nice if my doc would just talk to me.  Dec . is a long time from now. 

[craigmosley]

Elise had this too..................for 3 days she felt a little rough........very dry with a head ache...........she had them every month and was the same for 3 days after.....................BUT..........the improvement after that was incredible..........the "Goblins" as Elise called them got her out of her wheelchair  and when she was due to have the next infusion she seemed as though she was very tired........as if her body was ready for the next boost...........


Hang in there.............Those "Goblins" are amazing !!!

[irish]

Tinker, Can your PCP prescribe Plaquenil for you? There are many GP who will do this for sjogrens patients. Otherwise, you might want to push the docs for Imuran or Cellcept or whatever DMARDS drug they feel will halt the neurological issues. Hopefully, they will get their act together.

The newest treatment for sjogrens is giving the Prednisone along with the Plaquenil and then start to taper the prednisone a few months down the road as the Plaquenil starts to work. The docs are also being more proactive about treating sjogrens as the sooner it is treated the better. Hopefully you will find a doc who will be on your side. Irish

[eyeamdry]

As a side-bar, isn't Plaquenil loads cheaper than Imuran or Cellcept?  Just wondering why docs wouldn't jump at the chance to try a cheap drug (for Tinker) than the more expensive.  Lucy

[Tinker]

Thanks for info, everyone.  I only wish my doc would TALK to me.  My neuro said she'd see me after the muscle biopsy so now I can go back.  She will prescribe something for me, I think...I hope.

I will check into these other DMARDS.  I doubt if my insurance will pay for the IVIG but perhaps the other drugs will be beneficial.

[gurs]

Im with Lucy......Plaquenil is the drug of choice for Sjogrens. It seems to really help with everything, the dryness, muscle-joint issues, etc. I was told by several doctors that IVIG will only strengthen the immune system, and calm down my flare a bit, but really wont give me the relief that I would get from one of the DMARDS. Ive tried them all, and none really helped me much, except Imuran, which I couldnt stomach, and placquenil. Rituxan didnt do much either? I too, am having extreme neuro issues....

Its been 4 days since My IVIG. The flu-like feeling and extreme muscle pain are gone, other than that, still feel terrible. Going to see the doc in a month and decide what to do next.

Gursie

[Tinker]

There is so much to learn about SS and all the drugs.  I bought a book by the tv doc , Robert G. Lahita, M.D.  , "Women and Autoimmune Disease."

This book is very good....talks about a lot of the autoimmune issues I have (all of them) and the drugs.   He says that a patient only needs the plaquenil if the organs are involved.  My organs are not involved.  So, he recommends symtomatic treatment.  I bought the Biotene gel and toothpaste and I like the gel.  Toothpaste doesn't freshen the mouth and I'm not sure it's helping.

He also says that SS pts. usually require steroids off and on for the rest of their lives.  I HATE STEROIDS. 

And he also states, " Almost all of my SS are seeing psychiatrists and psychologists, not necessarily because of depression, but rather because the antibody has an effect on how their minds work."  (p. 153)

WHAT???  What does that mean?

Does anyone know what he's talking about? He doesn't back it up with any more details about how our minds work.