Question for anyone who has had IVIg

How long does it take for the headache to go away. Dougie is complaining of a headache that seems to be varying between just horrible (if he is lying still) and unbearable (if he moves). I've given him paracetemol but it doesn't seem to be having a great deal of effect. Its worse today than it was yesterday when he got the treatment.

This is all convincing me that watch and wait with no treatment is the way to go....... so I guess thats a mildly positive outcome at least!

Thanks, Ali

Hey Ali,
I have had two separate lot's of IVIg and I didn't have any bad effects at all, poor Dougie, he sure gets a hard time.
Maybe a call to the doctor to check out if this is ok, I hope he feels better soon.

Hi Milly,

I think you must have been very lucky to have no side effects at all. I'm sure i've read about other people having a post IVIg headache, which is why I am not worrying too much, but its bad enough for him to be unable to concentrate on anything else. I've just sent him to bed to try and sleep it off. If its still bad tomorrow morning, I will call the doctor and check.

You are right anyway, Dougie has no luck recently - its time something went right for once!

Ali

Headache is a common side effect. I didn't get it but then I didn't get a raise in platelets either. Whether the two go together really I don't know.

I always feel for the children having treatments because often the treatment really is worse than the disease. I hope Dougie recovers soon and at least has some high platelets to play with for a while.

Ann, This has totally convinced me that treating Dougie is not the right thing to do. He's not even convinced that he wants to go through it again for the skiing holiday next month, and that was the whole reason for trying IVIg in the first place.

I just had ivig last friday, and saturday. The headaches are intense, but do get better. mine usually last about 4 days, then "spaced out" for another couple days. DRINK LOTS OF WATER!!! Im not sure how old dougie is, but i lessen the headaches intensity a lot by taking tylenol with coffee, then not moving for about 1/2 hr, followed by a hot shower. ive read caffeine can help with the onset of a headache, but coke or tea does nothing for me. Just my 2 cents worth, but for me, the headaches are expected. Best wishes..

Hi Ali, sorry Dougie has to go through all that!

When I was first diagnosed in /04, I was getting IVIG every week for a year. When I finally had my splenectomy, I didn't need IVIG for a year or so. When I had my first one after the splenectomy, it knocked me out for about 3 days; headache, nausea. At first, I just thought it was coincidence, but then it happened a couple of more times. I finally mentioned it to my hema about being pre-treated before the IVIG, and it helped. But what really made the biggest difference, was stretching the treatment time out over 5 to 6 hours instead of the 3 it usually took. I know that not every one has that option or really wants to, but for me, that was the best way.

So maybe you could ask for Dougie to be pre-treated before getting the IVIG. As you know, every treatment affects us all differently. Good luck and keep us posted on how he does.

I used to get the severe headaches, they slowed the dose into my system and it eased them, however the "spaciness" didn't go away. It does take longer this way but I used it as a chance to catch up on my reading while receiving the transfusion. Tylenol did help me tho'
I am now on NPlate and it seems to be working with the only side effect being sleeplesness.

Thanks for your replies - its good to know that its a common effect.

Dougie woke up with the same headache, so I phoned the hospital to see if they had any other ideas for pain relief. They told me to take him to the local hospital to get checked out.... but Dougie refused point blank to go. He said he didn't want to move and he hates the hospital. I can't physically pick up a 13 year old and take him, and all my persuasion just didn't work. This afternoon he has seemed a bit better - he's moving around and eating and drinking. He says he's still got a background ache and it hurts when he moves quickly or jumps - coming down the stairs had him holding his head in his hands for a good 20 minutes for example. The problem is that now I am in big trouble with the hospital for not taking him. The nurse I spoke to on the phone made me feel like a completely irresponsible and ineffective parent.

I am not sure they could do the drip much slower as it took nearly 7 hours as it was, and he had the headache and nausea pretty much the whole time, even when they were going really slowly at the start. But I will ask about pretreating him if we ever do it again. They don't seem to do this as a standard.

Cindy, I can't imagine how you went through that every week!
Heyseuss - he hates coffee, but I've had him drinking loads of water and coke.
Ann, I really hope there is some sort of positive correlation between headaches and good responses!!!! :silly:

Ali,
When Hannah was first diagnosed, she had WinRho, which caused an anaphylactic shock reaction and then some very intense and painful vomiting of blood. So then they switched to weekly IVIGs. Knowing what I know now, I would NEVER put her through that again! At the time, they made it seem as if she'd be dead in a few days if we didn't "do something". Since our idea of "do something" didn't include Prednisone or Splenectomy and WinRho did not work, I reluctantly agreed to the lesser of the evils, IVIG. At the time, I had no computer access, nor, did I know how to use one! We were given very minimal information on ITP. Anyway, it meant that I wasn' t really sure what symptoms were from the IVIG, and which were part of the disorder itself.

Hannah had horrible side effects from IVIG! And for her, that was even with pre-treating and slowing the drip down to 14 hours. Even today, she recalls that the IVIG had a strange effect of feeling like it was burning her veins like fire, yet at the same time it would make her freezing cold. The headache would start within minutes, quite severe and would generally last 3-4 days. The nausea and vomiting would start right after we left the hospital. Pretty much guaranteed that we couldn't make the 20 minute ride home without pulling over to vomit. Headache, nausea and vomiting and great tiredness, not wanting to move or do anything for 3 or 4 days. Also, feeling beat up and achey and sore, like the flu or something. Not to mention her very irritable mood and touchiness-yep, that was some fun!

At the time, I'm not sure why, but I didn't even try and treat these symptoms with a homeopathic remedy, as I would now. If I had, I'm sure that something could have been found to help. After all, we have remedies that can help with even some of the worst flus (which, flu and IVIG have very similar symptoms, when you think about it), and we have some excellent remedies to relieve the side effects of chemotherapy or other poisonings, as well.

So, there are some homeopathic remedies that could help with the headache, I think, but I know that you're skeptical of that, so won't push them. If you can think of anything that has helped you after a bad hangover, you might try that with Dougie, as I think it's a similar feeling. Some lemon squeezed into his water or tea can help to alkalize his blood, which will help. Though he may not be hungry, try to stick mostly with veggies and fruits, nourishing soups or simple broths. Avoid meats and junk food for now. Fortunately, it will pass for most. At least now you know what his response would be like.
That was good thinking to try it out beforehand. Doubt he'd feel much like skiing in that condition!

Hope he feels better soon!
April

April

Thank you - I am only skeptical about homeopathy, not completely dismissive!

Why does alkalising the blood help? Dougie (strangly) quite likes eating raw lemons normally, so I imagine a bit of lemon juice in water would go down quite well.

Hi Ali,

Well, if you are open to it at all, you might want to give it a try. If you PM me, I can email you some possible remedies that you might want to look at, see which one seems most similar to Dougie's symptoms, and try it out.

IVIG, chemo and many other medications make the body's ph very acid. The headache, nausea and aces and pains are indicative of that. It's very hard on the liver. Lemon helps to create an alkaline state in the body. (which I know seems weird, as lemon juice is an acid! But, when it's processed in the body, it becomes alkaline. ).

Also wanted to add that despite all the awful side effects with IVIG (Hannah had around 24 rounds of it. ), the highest response she ever had was 42k, after 2 days, and after a week it was always back down to her usual 3-10k.
So for her, the awful side effects did not translate into a great response. I think I will always feel guilt over allowing them to continue on with it, and not being more assertive and advocating for my child.

I am running out of options here.....

Dougie still has the headache, although he was back at school today.

The consultant phoned and said he wouldn't be using IVIg again because of the severity of Dougie's reaction to it. He has already said that he won't prescribe steroids again because Dougie doesn't get a good enough rise from them (although I am hoping to persuade him to give this another try).

So I think I am down to simply "hoping" that Dougie's count is up at the end of January to allow him to go skiing.

How long can IVIg last? Is it possible that if Dougie gets a rise from this round, it could last until mid February?

Arghhhhhh! Ali

The IVIg itself is not supposed to last more than a week or a few weeks at the most, but there is a chance that once his count is normal he will be able to maintain it independent of the IVIg. That doesn't seem to happen very often, but it's something to hope for.

I had no side effects from 80g of IVIg when I was pretreated with tylenol. My count rose from 1 to 10, then dropped back down to 2 the next day. The gave me 80 more grams of IVIg without Tylenol and I got a minor headache, but not bad enough to effect anything besides my comfort. I within 2 days I was released from the hospital with a count of 42. 2 days later it was up to 172. The rise probably had a lot to do with the 80mg/day prednisone kicking in on the 5th day.

There are several brands of IVIg. If it is needed again, request a different brand. All IVIg is based on the same thing, but they are made differently and there is variance.

Hey, Ali -
Sorry Dougie is still feeling badly. I asked about him in the parent's section but just saw your post here and thought I would mention a couple of things:

The side effects of IVIG are what made us stop using it, but you never know if you'll experience the side effects until you try, unfortunately. But they can definitely infuse slower - by the last times that Brady received IVIG they had him stay in the hospital overnight so they could infuse the drug REALLY slowly and that helped. And just about everyone says that the pretreatment and hydration helps, but I know how it is - when you're in there and everything's happening it's hard to remember to ask for something if they're not acting like it's protocol. One suggestion for the headache: Brady got relief from sitting in the shower (I'd put a plastic chair in there) and letting warm/hot water run on his head and the rest of him for an hour or however long the hot water heater held out! Anyway - it sounds like you probably won't try it again.

One other positive note: IVIG always brought Brady's count over 300k and he experienced bad side effects so maybe there's a correlation. And, even at the beginning, Brady's counts would hold for 6-8 weeks, which I guess is a bit atypical but could happen for Dougie. In fact, one time after IVIG Brady maintained a count over 50k for a whole year. Reading other posts, I guess that wasn't that the IVIG held, but it did something to his body that resulted in his body holding his platelet count up. I hope that Dougie's count is high enough for skiing and you don't have to think about treating again!

Hi Ali,
I had IVIG several times back in July 2010. The first two times they did the drip fairly fast and it didn't raise my platelets. Then another doctor took over and he administered the IVIG over a 24-hour period. This seemed to work for me. I drank a lot of water, though, through, through the whole process. I didn't seem to have much side affects--at least not the headaches. Some of the well-known hemo doctors seem to recommend the IVIG over the 24-hour period.

This is just my thoughts. Sure hope Dougie feels better real soon.

Having had a chance to think over the weekend, I don't think any of us (myself, my husband or Dougie) would put him through that again unless it were an emergency. I basically took a well kid into the hospital and made him ill! He's better now thankfully, but I know I don't want to risk it again.

On the positive side though, Dougie told me this morning that his gums weren't bleeding when he brushed his teeth!!!!!! How nice it is to hear something isn't happening for once! So I am guessing that the stuff had some positive effect (count tomorrow so we will know for sure then) which is nice to know if ever he needed it in an emergency.

Ali

P.s. I thought I was quite assertive until I came up against the NHS. I am not sure if it is me going to pieces faced with a nurse or whether you just get what you are given with the NHS.............I did mention it, but there was no way she was going to pretreat Dougie with paracetemol etc.

Well, the answer to life, the universe and everything is 175. From everything I have read on this forum, I am taking it that that is a pretty good result after a week. It nice to know something works in an emergency. Just hoping its reasonably long lasting for him.

That's great! Fingers crossed it holds out for a ski trip!

Great news! I'm glad he had a response!

I have been treating with IvIG for about 3 years. They always give me tylenol and a very, very slow drip to reduce the potential for headaches. I may have a little headache for the day, but it has never been bad. Once they realized I was getting a headache they spread the treatment over 2 days to further reduce this complication.
Sadly, IvIG no longer seems to be a good option for ongoing treatment. Its logevity has gone down from 6 mos and now it only lasts 3 weeks.
Jef....age 65

Jef, sorry that the IVIG is not longer working as it did before. But, at least you can still use it in an emergency. It's really hard to understand why our body starts to reject certain treatments over time; that seems to be the case for some of us. Good luck on your next treatment course.

So sorry about his headaches! I have had IVIg regularly for 8 years now - anywhere from eery 2 weeks to now every 8 weeks. I get pre-meds of tylenol and benadryl which definitely helps. I sometimes have to take extra tylenol 4 hours after the first dose. I have had times when the headaches were awful, but I also think the rate of infusion can help. Times when the line kept getting stopped with bubbles and they finished my infusion on gravity (not regulating the rate), my side effects - headache, nausea - were much worse.

I had the headaches exactly as you described for years. I finally pretreated with benadryl and Tylenol and this seemed to help lessen the severity. I also found that slowing the IV drip down was also helpful but always gave in and asked them to speed it up when I got antsy in the hospital. The benadryl gave me a nice sleep while in the hospital too which is always a plus!!

I am getting an even worse headache from NPlate after a year a half of being on it. I forgot how bad they were! However, the quickness of a simple injection is way better than the day in the day stay unit.

I hope the IVIG allows for great skiing for Dougie.

I had my first go on IVIg this weekend, courtesy of the NHS - they pre-treated me with hydrocortisone, paracetamol and piritin to minimise the likelihood of an allergic reaction (given that I'm allergic to penicillin, erythromycin and a few other things). I have only had a slight headache since, which has pretty much gone now, so maybe that pre-treatment helped. I had been expecting the worst after reading about the possible side-effects of IVIg so feel quite lucky right now, especially after reading Dougie's story. Of course, I don't know if my platelets will continue to rise yet (up from 2 to 48 after half the treatment course) or how long they'll stay there if they do - I'll hope for 175 like Dougie!

Hi Rachael,

I knew that other people pre-treated for IVIG before Dougie had it. I can't really explain why I didn't insist that they did it - or even why they didn't do it without my asking. It was a bit of a nightmare though!!!! I don't think we will be doing it again unless its an emergency, but its good to know it works. The 175 count was exactly 1 week after he had it - I seem to remember it peaks after 4 days or something? The 1 dose of IVIG kept him above 30 for about 3 weeks which was a nice break. I hope you get a similar or better result.

Whereabouts in the UK do you live?

Ali

Rachael,
You did very well for your first treatment. Like I mentioned before, I had at least 5 IVIG treatments withing about 6-8 weeks. They pre-treated me, too, so I didn't have any serious side effects. Just a headache. I'm glad you are doing well and hope you continue to do well.

Dee Dee

Thanks DeeDee, Ali

I live in Glasgow, and am a regular at Clinic P at the New Victoria Hospital as an out-patient, in-patient at the Southern General. Have to say that the medical staff have been very good, I feel very much at home wherever I turn up for treatment! I do agree though that a lot of the education about ITP comes from looking on the internet rather than from doctors directly, but it's not very common compared to everything else they see, so I suppose that's understandable. Plus it's such an individual condition, so they can't predict anything with certainty.

I have my blood test tomorrow which will be the 4 days post-treatment - so that should be the peak then? Here's hoping my count stays up above 30 for a while too

According to this www.ukitpregistry.com/itpforum/about.htm Dr Catherine Bagot is the ITP expert in Glasgow. The Centres of Excellence for ITP initiative is a great new thing.

Next time I see a doctor at my usual clinic, I'll ask about the centre of excellence to see if there is some kind of co-ordination between different clinics in Glasgow.

Had a bit of a down day today - the 2 day dose of IVIg I had 10 days put my count up to 140 last Wednesday, so had high hopes that I'd get a few weeks out of it. But it wasn't to be - count down to 26 today. Was sensing the familiar feelings of fatigue before I phoned for the results, so I suppose I should have been expecting a drop of some sort, but I've had a week of feeling energetic, being productive at work, even walked to and from the hospital this morning (2 miles each way). So, I'm disappointed, I suppose, after raising my hopes too high - will learn not to do that again! IVIg was touted as the main hope for splenectomy avoidance but at least the staff nurse I spoke to this morning was very pragmatic about that option given my penicillin allergy, and my mention of the scan to see if the spleen is actually doing the majority of the destruction. Suspect romiplostin will be the next item from the ITP menu to be sampled - am being discussed at the haemotology department meeting on Monday so will discuss when I'm in for another blood test next Thursday.