i have sero positive erosive RA. I started on combination therapy 7 weeks ago , high dose I think . Methotrexate 25 mgs week, plaquenil 200mgs twice a day and a sliding scale of prednisolone which started at 30mgs. If things continue as they are now i do not think I will cope. Any positives on this. Think I was coping with the extreme tiredness but now with the breathlessness to its all getting to be too much.
poor thing. it does take longer than 7 weeks for the meds to kick in so wait it out. mindfullness / meditation is a good practice to start to help cope with the bleaker moments. and if really down, ask for support cos many people get support for that too. hope you feel better soon. j
Hi Lynne
I've had RA for a year. I'm on 25 mg methotrexate and now hydroxycgloroquine 400 mg a day. The medication does help eventually Unfortunately it just takes a bit of time.
From my point of view I've never been pain free but its less than it was. I have good days and bad days but to be honest more bad days.
You learn over time what you can and cant do. It took me a long time to accept help because I'm independent and don't want to rely on anyone else but you give in eventually.
Its a battle accepting it and living with it.
Dont be hard on yourself.
Hi Lynne,
Breathlessness is one of the less common side effects of mtx so might be worth letting your rheumy know about. I used to get a bit breathless with it but was only on the evening I took my dose.
Like Jo has said it takes some time for the meds to work and for your rheumy to find the right combination so hang in there.
Lee
Hi lynne, please call your doctors office right away with your breathing/ lung problems you are having due to the methitrexate..this is a sign of extreme toxicity and is greatly effecting your lung function... its no wonder you are so exhausted and feel so desperate, and is nothing to mess around with or take lightly. Take this very seriously as our lungs are greatly needed to rid not only rid our bodies of toxic carbon dioxide, but also to be able to breath in oxygen. You must feel so awful, and i imagine it is frightening to feel this way. I would not hesitate as well to go to an ER, when breathing is so effected. This is a very toxic side effect of methotrexate. It was toxic for me as well, and was quickly terminated. The plaquinil does take a few months to saturate your system. I am extremely happy with this medication as it has no side effects for me but it did take some time. Please call right away or go to your local medical center immediately due to your breathing and exhaustion, as this can become so much more serious.
I too find it hard to ask / accept help. The one consolation is that I have virtually no pain at all.
Hi. The breathlessness started a week ago Saturday. I spoke to my Gp who suggested I increase my steroids and go for a chest x Ray. This is booked for Fri.
Thought I would let you know I saw the rheumatology nurse today. She was very helpful. Due to the breathlessness the Methotrexate has been stopped and I will start on Sulfasalazine and the steroids are increased again. I already look like a chipmunk. Also had a chest x Ray, she will ring me tomorrow with the result. Thank you all for your advice.
Hi Lynne
Glad you've seen the nurse about it, they've got plenty of options to try and everyone reacts differently to the treatments. I take a fairy low dose of sulpursalazine at the moment (100 grams per day, down from 300) with no problems. Hope it works well for you
Lee
Thank you. On 500mgs Sulfasalazine daily for the first week. Will let you know how I get on.
Hi Lynne
I have just been diagnosed with the same and prescribed methotrexate 15mgand folic acid, had a steriod inj prior which also gave light releif too. I am on my 2nd wk of medication. I also take ibubrufen and paracetamol inthe short term alternating each 4hr when neccesary. I am feeling tired and heavy chested but overall pain is reduced some what. Am also being urged to take prednisolone but am hold off on that one as it might not be needed. We all respond so differently to meds.
Hi. I feel for you. The exhaustion is very difficult to cope with, it also made me tearful and find even now I avoid people except very close friends. I take steroids which are helpful but have to confess I now feel I look like a chipmunk !!!!!!!!! Life goes on and have to suffer consequences as they are beneficial . Wish I could say it will improve but as I am not at that point yet it is difficult to say. one point tho, am sure I read that ibuprofen does not interact well with methotrexate. May be worth checking this out.
Hi Lynne, I was told that regular steriods cause weight gain. I had it cleared by my arthritus consultant about ibubrufen, considering my flare up was continuos for more then 24hrs in extreme pain, it would have been too much of a coinsidense for the pain to have subsided as quick as 1hr after taking ububrufen. i only take them when absolutely neccesary, 1 maybe 2 in 24hrs same with paracetamol but making sure there is 4hs between the two. No kinds of side effects and I have managed 3 solid days at work so far. As I have had it explained, no one reacts the same with medication. This seems to be working for me at present so will continue til otherwise advised. I am active seropositive, was in continuos extreme pain for several months before getting to see specialist consultant. Since before Christmas 2014, I was barely managing 2 full days of work with 2 days break in between. That was being able to hardly grip, bend and extreme pain, nightmare. now, almost 3 comfortable days hard graft, If I beleived what I were reading about methotrexate side effects and some of the experiences from patients on here and other sites, I would not have started the medication. Not every one, but maybe one or two people on here like to scare monger for what ever reason. I dont want to get into slating anyone. I think if you follow the advice of a specially trained consultant, you shouldnt go far wrong. It is laughable when i read that someone who has been prescribed methotrxate writes that he's having a bad time from this medication so goes out with his mates into town and gets hammered!!! or a female on so many types of med sitting at her kitchen table knocking back a bottle of wine!!. Personally, think i will remove myself from these forums. Anyway, you take care and dont beleive all you read.
As you say we all react differently. I am off methotrexate for 2 weeks and on Sulfasalazine . Will have to be on both after the 2 weeks. Will see how I go. As you say don't believe all you read but it does provide insight into possible side effect, maybe something we have noticed but choose to ignore. Like you mine started around Xmas. I have no pain now so that's a bonus!!! You take care and follow regime that's right for you.