I was recently diagnosed with ITP, and I'm having a hard time dealing with it. I thought RA alone was a lot, and now I have to tackle ITP as well. I read the disease is manageable, but my Hematologist did scare with the words Luekemia and Lupus. I didn't realize the range of autoimmune diseases, and how they are all linked and connected to each other. Scares me that I might have a third one coming. Hematologist reccomends that I follow up with Rheumy on the new diagnose, and treatment changes if any. I'm so drained and exhausted. I just really want to knock some sense into my immune system, and tell them these are the nice guys. 😃
Does anyone have RA and ITP? Or other autoimmune disorders? How are you coping with this? 😢
Written by
KT888
To view profiles and participate in discussions please or .
It's lengthy. Immune thrombocytopenic purpura. In short its a low platelet count. My antibodies from my spleen is attacking my platelets. This would cause me to bruise and bleed easily, as I don't have enough platelet to stop the breeding.
I'm not pale. I just run the risk of bleeding if I injure or cut myself. This means I can't do anything crazy where I can easily get hurt. Dental visits will be interesting.
I think it is a quite common thing to have this and RA. But what a unhelpful doctor! Please try not to worry about getting more auto-immune disorders as that really may not happen! Yes people can get more, but a minority not the majority. And there’s little you can do to prevent this so don’t make yourself sick worrying.
Is your platelet count low? Presumably yes if you feel so drained. So are you getting treatment to boost it? I hope that helps. And I hope you have the most easily manageable form, or even the one that goes away!
You are coping with RA, so you will cope with this too. Just try to be very kind to yourself as coming to terms with it will take time. But sympathy as it’s the last thing you need - especially this year.
My platelet count is 60-80. Not normal, but not in the danger zone as far as I'm told. I was at 5 when I was admitted. I'm trying to do this naturally and have added more supplements to my diet. I'm just worried this is just the beginning of something else. But you're right, I shouldn't worry as there is little I can do. Plus we know RA feeds off stress.
I think foods are possibly more effective than supplements....but I guess you have that sorted?
Having gone from 5 to 80 sounds like a good sign, so hopefully you’ll keep heading up. But if it doesn't’ do think about conventional treatment as more likely to pick up other things with a low count.
I'm really sorry you have more to add to your already full plate! It sounds tough, especially as you say with trips to the dentist etc. I think helixhelix says it all, try not to worry, and she has put it perfectly, you are already coping with the RA, you will cope with this too!
I love you saying you just want to knock some sense into your immune system, this is exactly how I feel!
I don’t know about IPT but it is not unusual for others to follow. They are taking about Lupus with me although not formally yet. Some new blood tests with only slightly raised levels came in. The hope I take from this is that treatment may be more targeted and therefore ‘fix’ me. The rheumy nurse rang me yesterday about rituximab because of this and that the Amgevita is not doing what they hoped for. On we plod to finding the fix. We will get there. Better to have the diagnosis and therefore help to work out how to manage
Oh ba, I am so very sorry to hear that. I knew he was very ill but I didn't know he had passed. 🙏 Please accept my deepest condolences, I know you were close to him. The one consolation here ba is that he is no longer suffering. I hope all goes smoothly on Thursday - as smoothly as it possibly can and I'll be thinking of you. Take care. xx 🤍
Hi bubblyalex, keep us posted how that works out for you. Looks like I'm headed down that road as well. If ITP does not get better. Rutuxin is the only drug to treat both.
I too am in the same boat & the sudden exhaustion is awful. My platelet count dropped to 96 a year ago & I was diagnosed with ITP soon after. Lots of blood monitoring & the Methotrexate was dropped to 15mg from 20mg. I am also on Imraldi. A haematologist has been mentioned but atm I have not been referred. How did you know you also have lupus? Try not to worry too much, my auntie has had ITP for 30 odd years & still going strong, but she doesn’t have RA. I’m beginning to be able to tell when my platelets are down, the sudden “crash outs” plus my spleen begins hurting if I bend down. Hugs, try not to worry too much, this wicked disease has a lot to answer for xxx
Hi Julia! Thanks for sharing. I don't have Lupus, but doc mentioned I could be headed down that path. He gave me all the pro and cons with no sugarcoat. I was like a walking zombie walking out of his office. I did some research on what you said about reducing Methotrexate, maybe I shouldn't...opps. Methotrexate can induce ITP. That culprit! I'm on 12.5mg, but was on 10mg when diagnosed. I hope the increase doesn't affect my platelet 😮. Meeting with Rheumy soon.
I've suffered from RA for 30 years but I'm now in remission, I've also been diagnosed with ITP, I know quite a lot about ITP because my wife has suffered from chronic ITP once spending 5 weeks in intensive care and almost dying, the "I" in ITP is for idiopathic in other words for no known reason, I'm not trying to frighten anyone just telling my experiences, the guidelines for the platelet count is approximately 150 to 450 remember that's thousand so bottom line is 150.000, my wife developed a problem with her right leg her GP treated it for water retention, that didn't work so she went back to the surgery and another GP said it was a leg infection so prescribed antibiotics within short time that obviously wasn't working, I'm getting worried now she had bloodshot eyes and her gums were bleeding, took her straight to A&E within a reasonable short time they diagnosed with ITP with a platelet count of 20, it was quite a difficult time for the next 2 months, I visited her every day from 9am to 9pm for 5 weeks friends started to tell me I looked ill but my wife and I are very close, when someone is in CCU you can visit almost anytime as long as you are not in the way when they need to do something, that was usually when I got something to eat in the hospital, they don't tell you when you can return you have to use your initiative if you ring the door bell too soon they just don't let you in until they've finished what they need to do, we live in a small town so platelets where collected from the nearest city 50 miles away and they were delivered transfused into my wife every day, when I left the hospital at night she had a count of 50 next morning they were down to 20 she just couldn't hang on to them, I had a call from the hospital at 7am one morning to go to the hospital straight away she had taken a turn for the worse, so putting my son and daughter in the car went straight their mum was on a ventilator, you say all the silly things mums going to be okay without thinking what else could I say, I stayed there that day someone collected the kids for me, the following day was a Sunday and I was told a brilliant young haematologist consultant would visit CCU in the morning so I made sure I was there to speak to him I was amazed how young he was to be a consultant, he read all the notes and then said he wanted to try something and that was for my wife to have an inject he thought would help but I would have to sign a consent forms, left with little choice I signed and from the moment she had the injection she started to improve, it was still a long haul because she'd had a bleed on the brain which caused a stroke she couldn't move her arm or talk properly, thankfully she made a full recovery, I've told you what happened because its a true story, now me I've been diagnosed as suffering from ITP in the last couple of years, because my reading is below the guidelines, I believe its a side affect of the RA medication I've been on, my count is usually between 100/115, but to my knowledge I've had no health issues regarding platelets and live a very active life, every word of what I've said is true......................the young haematologist consultants name is Sean Macpherson he's now living in New Zealand.
I have RA and Collagenous colitis very exhausting between the two. my Rheumy and Gastro have had to work together to find suitable treatment for both. They have to work around allergies I have too. 😉
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RA
RA and then no RA. Is this really possible?
RA ….
Not RA
Palpitations with RA?
