weelky ivig's

Goal is getting me off the prednisone!! So I was on 30mg, now on 25mg and IVIG's once weekly. Next week on Thursday after work getting IVIG's and hoping to tapper even more off the Prednisone. I just have so many side effects and have to take other medications to deal with the side effects. Like my doctor said I'm to young to start having signs of Osteoporosis.. Not going to change any other medications right now, just one at a time. End goal is just to have me off all medications and just beware of my numbers and signs of low numbers. I may end up on IVIG's weekly, bi-weekly or monthly for long term (life). It will be better than what I am having to deal with right now.

But wanted to know if anyone here has had weekly IVIG's (one day thing).

Last week 38k then PA up my pred to 30mg and today 72k.

When I was first diagnosed, I got weekly IVIG's. I would go for blood work, wait for the results then get treatment. This went on for the first whole year. But I was also on the Pred.

She is getting me off the pred. But did you get one day treatment or a couple back to back?

I got one treatment a week. I would get there early for the blood test, wait for the results and then another couple of hours to get the IVIG.

Ok so they did it IV, somewhere I have read said something about subcutaneously. But the first treatment was IV then the following ones where SQ.

Amber, you got immunoglobulin subcutaneously? That's very unusual for ITP. It's given that way sometimes for immune deficiencies, CVID and so on, still takes a couple of hours and is done with 4 or 5 needles at a time usually in the thigh. The amount given is less than that for ITP. So I am curious about what you had.

I haven't started the weekly treatments yet, was just wondering if anyone has had them. I have read where after the first treatment IV, the following week it would be SQ. I will let everyone know how this goes down once I get started on the weekly treatments.

I just thought.. probably anti-D... WinRho or Rhogam. That's been given subq experimentally recently. Let us know how it goes.

It was done iv and took about 3 1/2 hours, no cbc since the week before was 72k. Will see PA on Thursday before treatment and will get cbc and lower dose on pred.

This week 137k and dropped to 20mg of pred, IVIG's . Next week IVIG's and an CBC to where a I am at, the following week meet with PA drop pred again and IVIG's. I'll keep this up until I'm off pred, then getting off Promacta.

Hi all,

Has anyone had any side effects to the immunoglobulin? I was admitted to hospital on Friday because the hemo thought I was being to 'symptomatic'. I've recently had my second dose of rituximab but my platelet count has been at 0 for weeks so they decided to give me some immunoglobulin to temporarily raise them and try and get rid of some of my symptoms.

On Friday I had 750ml, and had no reactions, however the following day I had a headache. I had another 750ml on Saturday but my headache got considerably worse and was unbearable! Alongside the headache I had vomiting, hot sweats and chills and bad nose bleeds. The doctors rushed me down for a emergency CT scan which came back clear.

Now they want to do a lumbar puncture to make sure there isn't a small bleed. Although I'm feeling a lot better than I was yesterday, I still have a slight headache which gets worse when I move or stand. Has anyone experienced anything like this before due to immunoglobulin? Or is it more likely to be a small bleed on my brain?

Thanks
Katie

Katie:

It's probably aseptic meningitis, which is a common side effect of IVIG. It usually resolves by itself in a few days.

www.immunedisease.com/choosing-a-therapy/how-ivig-works/ivig-side-effects.html

Katie,

Aseptic meningitis is when the lining of the brain and spine becomes inflamed by something other than a bacterial or viral infection. Chemical meningitis is a form of aseptic meningitis caused by medication. The symptoms are indistinguishable from an infectious meningitis.

Ellen had a severe delayed reaction after her first IVIG with the classic headache and neckache symptoms of meningitis. She had severe nausea and horrible chills. She was hospitalized and given IV antibiotics for four days before it was decided that the IVIG had caused her symptoms.

Ellen feels that the hospitalization was major overkill, and in retrospect it was.

In short, chemical meningitis can easily explain all of your symptoms except nosebleed, which could easily be related to low platelets and winter weather.

Thank you Sandi,

I had read that prior to having the treatment, and mentioned it to the Doctors once I had started feeling poorly. However they continued the drip until it was finished. They seem pretty adamant on doing the lumbar puncture to be on the safe side. My regular hemo is off at the minute but is back Monday. It's difficult to know which doctors are familiar with ITP.

They want to give me a drug called eltrombopag to higher my counts but none of the nurses or registrars have heard of it. I've had a look online but it's all very contradictory. Does anyone have any useful information on it?

Thanks Katie

Thank you Rob!

I don't think they really new what to do with me when the symptoms started! I'll mention it to my doctor the next time I see them and hopefully it will detour them from giving me a lumbar puncture!!!!

Thanks again!

Katie

Eltrombopag goes by the trade name Promacta. It stimulates platelet growth, by pretending to be the hormone thrombopoietin. It is in the class thrombopoietin receptor agonist, often called TPO for short. It is 80% effective with minimal side effects.

The major risk is that it can cause blood clots. Therefore, the target platelet count is kept low between 30,000 and 50,000. Not all MDs adhere to that, so keep it in mind not to celebrate if your platelets go back to "normal" with treatment. You will need to lower the dose.

For unknown reasons, people using TPOs sometimes go into remission.

Katie:

Eltrombopag (Promacta) isn't a bad way to go right now if your counts haven't gone up from the IVIG. Have you had a recent count?

I get why they want to do the lumbar puncture, but I'd want to talk to my Hemo first too and make sure it's really necessary.

Did they give you any pre-meds prior to IVIG? The best thing to do now is stay very hydrated.

Rob:

Thank you, one website was saying one thing and the next was saying another! So is it an alternative to immunoglobulin? I'm already on rituximab!! It's so hard to keep up!

Thanks again for the info!

Sandi:

My count yesterday had gone up to 1. I'm not sure what my count today was but I'm starting the eltrombopag tonight. They didn't give me anything pre-meds beforehand.

My hemo is in tomorrow so I'll get chance to speak to her before anything is set in stone. Chemical meningitis seems to make sense and all of my non ITP related symptoms seem to have gone now.

Thank you again for your advice! Really really appreciate it!!!

Be default I've ended up having IVIG treatments every 2 to 4 weeks depending on what my counts have been (also completed Rituxan rounds about six weeks ago). I have CBC done once a week right now (sometimes twice a week) since I have dropped from the high 50's to low teens or single digits very quickly. I too have a goal of getting off prednisone -- hasn't worked. Started at 100mg and am now down to 25mg. IVIG is just a temporary bandaid though -- not a fix.

Dangit, I wish they had given you pre-meds. I don't know why it's not standard procedure since aseptic meningitis seems to occur fairly often. The articles say it's rare, but I see it here pretty often. Seems to be a nasty thing to go through.

Eltrombopag can take time to work, so you'd want to start it soon. But you want to be sure that counts don't shoot up from Rituxan and IVIG at the same time or blood clots are possible.

They'll get you straightened out yet, Katie. You've got a great handle on all of this and you're doing a good job of researching and advocating for yourself!

I wish they had given me pre meds too haha! It was not the most pleasant experience.

I've just had my first dose so fingers crossed. I'll be sure to make sure my count isn't shooting up to high. Just had another set of bloods before my tablet and my counts still at 1.

Thank you Sandi!!!!

Katie,

IVIG is a fast but short acting treatment for low platelets. It usually works, but is too expensive to use regularly. It is only used long term when nothing else works. Rituxan (rituximab) is a slow response treatment usually given 4 times, a week apart, and is intended to give a long term response, lasting typically about a year, some more, some less. Promacta is an ongoing treatment, given as a daily pill.

So to answer your question, each medication works differently and serves a slightly different purpose.

Sandi,

I think a lot of cases of aseptic meningitis are missed because they are not of hard enough severity to pick up the classic meningitis symptoms like Ellen (and probably Katie) had. The only reason that Ellen's was treated as meningitis is that we first went to her neurologist because it looked like a severe migraine and he immediately saw her in his waiting room because she was in such bad shape, gave the preliminary (and ultimately correct) diagnosis of chemical meningitis, and sent her to the ER across the street in a wheel chair shivering violently wrapped in warm blankets and vomiting into a barf bag. We don't hear of a lot of headaches of that severity from IVIG, so they probably don't get properly attributed to meningitis.

Rob:

Eh, I don't know - Nearly everyone here that describes it, whether it's a child or an adult, says that they had a horrible headache, vomiting and chills, etc. They have all seemed pretty severe to me. Due to the timing of the headaches (usually the day after IVIG) and the severity of the symptoms, it's always the first thing I think of. I've heard it over and over here. I can't believe that doctors would even miss it...boggles my mind.

I know the first thing they have to consider is ICH and it's good that MRI's are done, but aseptic meningitis should be the next thing they consider and I can't believe so many doctors are baffled by the symptoms. It's like they administer these drugs but don't know anything about them.

I haven't seen that these diagnoses are missed medically, they are just way too slow at figuring it out. By the time they know what's going on, the symptoms are gone and they didn't do a thing to really help the person when they needed it.

You are right that there have been a good many cases of aseptic meningitis on this website.
For whatever reason, this seems to be an overlooked reaction.

Aseptic meningitis is not listed on the product information sheet for Gammagard brand IVIG, only headache and a variety of other symptoms. Even the PDSA website lists individual symptoms, not aseptic meningitis.

Here is one case report calling aseptic meningitis rare and in need of recognition... from 2011!

www.ncbi.nlm.nih.gov/pmc/articles/PMC3296420/
J Pediatr Neurosci. 2011 Jul-Dec; 6(2): 160–161.
doi: 10.4103/1817-1745.92858 PMCID: PMC3296420
Aseptic meningitis following intravenous immunoglobulin therapy of common variable immunodeficiency
K. Kaarthigeyan and Vasu V. Burli1

Dear Sir,

Intravenous immunoglobulin (IVIG) is a life-saving therapeutic agent, increasingly used to treat various immunological and hematological disorders. We encountered aseptic meningitis in an adolescent boy with immunodeficiency 10 days following IVIG therapy. This entity may be more prevalent than one would assume from the low number of reported cases. We report this due to its rarity and the need for recognition.
[...]

Here is another from 2014:

omcr.oxfordjournals.org/content/2014/7/132.full
Acute aseptic meningitis due to intravenous immunoglobulin therapy in Guillain–Barré syndrome
Rajendra Singh Jain, Sunil Kumar*, Rakesh Aggarwal and Jagdeesh Chandra Kookna

This week 135k the week before 129k, I get cbc beforehand and down to 15mg of Prednisone.

I do get horrible headaches, all I did today was sleep and take pills.

Very depressed, if it keeps going like this I'll have my pred wight off in no time. Had coffee and my green goodness. (That's it).

The port has been wonderful!!! This week 121k, pred dose 15mg,12.5mg, 15mg and so on until next Thursday. The weekly IVIG's don't take as long with the port.

Just a footnote to an old thread: It turns out that subcutaneous immunoglobulin has been successfully used for ITP. After initial treatment with IVIG, the patients were switched to a much lower dose, administered subcutaneously, for long term treatment.

www.bloodjournal.org/content/124/21/5012.full.pdf
Subcutaneous Immunoglobulin (SCIG) in Responders to Intravenous Therapy with Chronic Immune Thrombocytopenia (ITP)

Francesco Iuliano, MD, Eleonora Iuliano, MD*, Maria Luci, MD*, Alessia Perricelli, MD*, Angelo Pomillo, MD*, and Elisabetta Abruzzese

Conclusion

Application of SCIG was well tolerated, easy to manage, and led to stabilization of the disease course.The therapy facilitates home therapy, as the infusion technique is easy for children, adults and elderly people to learn and there is no need for venous access. SCIG home therapy leads to significantly improved life situations for the patients; the SCIG home therapy regimen in particular reduces the costs of treatment. Overall costs per patient were strongly reduced in SCIG in comparison to IVIg.SCIG may represent an effective new therapeutic option in chronic ITP.

Interesting. I'm using SCIG for an immune deficiency. Sadly IVIG did little for my platelets the one time I tried it, so it's doubtful that it's going to keep my count up. It wouldn't be my treatment of choice for ITP though, but it's better than having to go to the hospital every three weeks for IVIG if that's the only alternative available.