Cleared of ITP. Question meds your on when diagnosed.

Hi Sandi, been off the forum for a while. if you recall I was diagnosed with ITP. if you remember I questioned my hematologist about a Biologic med I was on prior to the diagnosis and was told highly unlikely. Oh well heres my story ,which I hope may help new or even old patients diagnosed with ITP. I was on a Biologic for psoriatic arthritis, PPP psoriasis and other chronic illnesses. My platelets kept dropping. I decided to stop the Biologic med as they were not helping with my conditions. In june I went to Europe . I was in Italy with Italian family. Into my second day I was sitting with family where I was asked if I was feeling ok. I said why and yes. I was told I looked off. I felt fine and blamed it on jet lag. Anyhow, same thing happened this time with my brother who asked at dinner. By this time I became annoyed and asked what the heck. He told me I was dosing off. Again I felt fine. Well at 5:30am the next morning I was rushed by ambulance to hospital with severe pain in my stomach stern and problems breathing. I was in and out in the ambulance.
I remember waking up in intensive care. I was out of it but was strong enough to tell them "I have ITP". I passed out again after that and awoke with a full sized oxygen mask and hooked up to everything. I was able to finally asked what do i have. Diagnosed with walking pneumonia and pericarditis and eventually an arythmia. I asked about my ITP. They said you dont have ITP ,what are you talking about. My platelets were at 270, 320 and 360. Once stable, I was flown by air ambulance back to Canada and was driven back to hospital close to home. Once again I asked about my ITP. I was told I did not have ITP. Il was told I was being treated for an pneumonia, pericarditis and an arythmia which was corrected in italy by shocking my heart. Well I received a call from my Hematologist in hospital who told me she wanted to see me after I was discharged. After I was discharged I did go see her where she first chuckled" nice vacation" and then she came out and said thather earlier diagnosis of ITP was wrong
and I did not have ITP! I said I dont understand. I could see she was lost for words until I brought up the BIOLOGICS I was on. It took me some time to have her finally admit that yes that was probably the cause that my platelets were dropping and started coming up when I went up. I had researched Biologics and there are varied opinions on Biologics and ITP however, there is an article by two Drs that performed a study on a limited number of patients and the results were surprising on the correlation of Biologics and ITP. This is what twigged me . I hope this has shed some light .

Wow - what a trip! It's a shame that it went so badly.

Any drug can possibly trigger ITP and it's possible that the biologic that you were using did cause it. It's probably listed in the side effects. Rituxan is a biologic treatment for ITP and it lists thrombocytopenia as well. Now that you have normal counts, I can understand why those doctors would insist that you do not have ITP because you don't have low counts. It appears that you HAD ITP and it's not an issue at this point. I'm glad you're counts went up and you don't have to deal with that for now.

You were using Humira, right?

"Blood problems (decreased blood cells that help fight infections or stop bleeding). Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale."

www.humira.com/?cid=ppc_ppd_msft_franchise_brand_2015_humira_Exact_64X1790908

yes first I used simponi and then humira. How are you Sandi,?

sorry Sandi that side effect is not listed

What side effect is not listed?

Sandi when I was put on both the Simponi and the Humira . Both Drs the Dr that put me on Simponi (RHUMETOLOGIST) did not tell me anything and the pharmaceutical agent was waiting outside the Drs office and couldnt wait to have me sign off on it. she did quickly go over a few side effects but just the possible cancers (lymphoma, liver and kidney) . The Dermatologist who put me on the Humira same thing happened with him and the pharmaceutical agent when I was put on the Humira. I had to research them. Heres the part that really upset me is two weeks went by before I finally phoned the dermatologist and asked him if maybe it was the Humira could be causing the platlet drop
He said highly unlikely. He suggested having blood drawn every two weeks while I was on the humira to see if counts were still coming down
Well I hate to say it ,I was already off the humira for two weeks and he didnt even know it and I was having blood drawn by my gp and i noticed my platelet levels were climbing slowly , still slightly under the minimum range though only over two weeks since being off. Well I didnt take his suggestion about drawing blood every two weeks. Well I went to Europe and wñen everything happened with me there Im guessing all of the Humira was out of my system so my platelets skyrocketed
Never got a call from the Dr, but I called the pharmaceutical support gal and told her and even there no follow up call. I WAS MY OWN DR AND FIGURED IT OUT. THATS WHAT HAPPENED SANDI

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The side effects that you mention Sandi are listed outside of thrombocytolpenia. My point is the average person and older patients do not research
They put their lives in their Drs hand and dont question then

in the UK Humira is listed as having thrombocytopenia as a common side effect

I agree with you, Maronese. Many people do not research side effects. If they do, they tend to believe that it won't happen to them. Most of the time, those side effects do not occur but sometimes they do. People have to decide if the risk is worth the benefit.