Hi, I am now on 20mg Methotrexate and 400mg of hydroxychloroquine and my blood platelet count came back low from my last test. I have only been on this regime for a month. Previously I was on Sulfasalazine.I suffered severe neutropenia from Sulfasalazine and had to stop immediately.
I have dropped my hydroxychloroquine to 200mg a day hoping this will help with the blood platelets but I can't get in touch with the RA nurses until Tuesday to ok this. Has anyone else had this reaction?
I have not had this reaction but my advice to anyone in this situation is to use 111 service to check if you are doing the right thing. They have helped me in the past and a friend has just been helped with advice from a pharmacist, via 111, in the last few days. She had a similar issue regarding her meds to deal with.They can allay any worries you have with qualified advice.
I hope this will solve your dilemma 🙂
Have you spoken to your GP about this, I assume they flagged it up ?
No, it was the Rheumatoid nurses who flagged it up and of course now it's a bank holiday! I was feeling extremely dizzy and sick that's why I halved the dose but I am now stiffening up...but at least I don't feel quite so dizzy!
What did they say when they spoke to you, strange to flag it and not tell you if you need to do anything? but blips can happen and when I’ve had them I’ve had another blood test and they’ve returned to normal the majority of the time.
I have another blood test booked this week. I did have a COVID jab the week before and felt absolutely terrible, maybe this has something to do with it too. I've read on here lots of people are not reacting well to the booster, my arm came out in an itchy inflamed rash and I felt fluey and sick.
Hi there GreenteasI have low platelets too and although hydroxychloroquine helps lower them when too high, it doesn't make them too low. My rheumatologist told me it's a common feature of autoimmune conditions.
Conversely, I also have antibeta2glycoprotein which thickens the blood and have been told that the low platelets which, make it thinner occurs as a result. Can't quite get my head round that but I've stopped worrying about it as the platelets are only just below normal. My only concern is the purple spots abd bruises I get and wether or not I should still take the daily Aspirin for the antibodies. Hope that helps.
Crikey, it's all so complicated isn't it? Feels like everyone needs pharmaceutical training on top of everything else! I just worry these drugs are so powerful and they have all these unwanted side effects that can become as troublesome as the initial disease that life just becomes completely about the disease and medication and leaves little room for enjoyment or living.
Hydroxychloroquine doesn't usually cause any side effects. I've been taking 200mg for about 4 years and it's never given me any side effects thankfully. It's meant to modify disease and in my case I feel it has. It's not a painkiller so doesn't help with that. It's also a treatment for people with full blown antiphospholipid syndrome and helps with the 'sticky blood' so I'm happy to stay on it. But yes, where that leaves me with the Aspirin is anyone's guess. I did ask the question at my last appointment and I think she told me to carry on with it but then...GP said I shouldn't because I have ITP which is a massive exaggeration, i mean i don't think having mildly low platelets amounts to having ITP. Apparently symptoms don't occur unless levels plummet to below 100 (or something not sure) and every so often i get those symptoms and so i assume levels fluctuate and during those times i should perhaps lay off the Aspirin? Still haven't found an answer in spite of asking. Next appointment in September and Apparently I've been referred to haematology.
As you say, I'll probably come out of the appointment none the wiser and with even more questions!😂
Hi I take this combination hydroxychloroquine takes a long time to get out of your system so lowering it probably not causing your flare yet jab may have something to do with your issues you need to take guidance of nurses. I was on 400mg for a long time should have been on 300mg but rheumatology said no 300mg tabs!! Did have dizziness for a while and few other issues but OK now touch wood. You really don't know if it's the methotrexate hydroxychloroquine or issues after jab so don't alter meds yourself best wishes.
Thank you. It's really hard to know what medication is causing the reactions isn't it? I have reduced to 200mg without consulting the RA team ( bank holiday) because I was getting really confused, getting my days mixed up, headache, eye ache and I do feel less dizzy having halved the dose for the last 5 days, my head feels better, but I really hate taking medication so this could just be in my head. I shall consult with the RA team on Tuesday but I know how sensitive I am to food and drink;coffee, bread, alcohol, but because I am tall and athletically built they always put me on high doses of medication but I don't react well... even cocodamol makes me woozy!
Aah, I understand now. Thank you.Mind you this is quite a simplistic measure, maybe metabolic rates need to be considered as well. My tiny ( 5"0) size 10, 86 year old aunty can tolerate much stronger medications than I can at 5"10 and 13 stone!!
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