Malaise: Hello fellow travelers. I was diagnosed with... - NRAS

NRAS

37,274 members46,139 posts

Malaise

Windonmyface profile image
20 Replies

Hello fellow travelers. I was diagnosed with seronegative RA in late January. and was put on 15 mg of prednisone, which relieved the swelling and stiffness in my hands greatly. Then I started on hydroxychloroquine (200 twice daily) and tapered to just 5 of the prednisone.

I’ve been on this regimen for 9 weeks and feel better than before the diagnosis, but worse than when I was just on 15 mg of prednisone: stiff, swollen, tingly hands and wrists AND moderate stomach distress AND phantom pain in other joints AND just a general feeling of malaise—vague discomfort and unease.

Does anyone else suffer from malaise? Does anyone have stomach issues as a result of either hydroxychloroquine or prednisone? Is 9 weeks long enough to throw in the towel on hydroxy? I was SO hoping I wouldn’t have to go on methotrexate—I’m scared of it along with all the other DMARDS and biologicals. Help!

Written by
Windonmyface profile image
Windonmyface
To view profiles and participate in discussions please or .
Read more about...
20 Replies
helixhelix profile image
helixhelix

Hello and welcome. This disease requires endless patience, everything is so slow. Apart from the pain and swelling that can flare up in minutes!

Prednisone is a bit of a devil drug, and yes it can make you feel marvellous but unless there’s no other option it really is not a good idea to stay on it long term. So try to put that behind you.

And hydroxy can take months to have full effect. Docs tend to want you to try things for 3 or 6 months to give it a proper chance to work, and for any side effects to wear off. And the malaise could be a side effect, or a sign of disease activity. You won’t really know until you’ve been off the prednisone for a couple of weeks.

But please don’t be scared of the other drugs..they have given me my life back and I wouldn’t be without them.

Windonmyface profile image
Windonmyface in reply tohelixhelix

This gives me courage on a pain- filled night!

Lyndy profile image
Lyndy

I think a feeling of not feeling quite right is fairly common for those of us with RA. I would ring your rheumatology helpline for advice about the meds... your tummy problems might well be down to one or other of those.

I also felt that I didn’t want’big meds’ like mtx but you have to weigh up the pros and cons. You do not want to get stuck on steroids... they do so much damage.

If hydroxy isn’t suitable or isn’t working then you do need something that is effective. There is evidence to suggest that hitting the disease hard in its early stages gives better outcomes long term. So don’t close your mind to other meds...ask lots of questions. xx

Windonmyface profile image
Windonmyface in reply toLyndy

Thank you. This is helpful.

I am still working through on MTX which as positive sero RA however I know the drug does good stuff but I did suffer side effects BUT I still went back on it after 5 weeks off, as I could feel the difference on my joints. I also learnt to be careful of supplements that caused contras. Pred I hate and I was on 20mg dose whilst of MTX and hated every minute of it but also noted the higher I got on the dose the less effect I was getting anyway. I was diagnosed Sept/Oct. I was told 12-16weeks was a timeline to work too and 13weeks I could feel a difference in the joints and could see my blood works were showing decreased activity.

So I would say you need to learn what I am in which is PATIENCE. RA is a slow burner. I am learning every day what I can and cant do and also fatigue is huge part of my World as it is for many on here.

Getting your life back to some form of norm is a goal but you have to pepper it was a dose of realism about RA too. It can change you but you have to adapt.

Be positive about life and we all get days when we rant too!

Windonmyface profile image
Windonmyface in reply to

Thanks for the reminder to have patience and to adjust my expectations. May I ask which supplements caused problems for you?

in reply toWindonmyface

Turmeric but with high dose black pepper the pepper caused some respiratory issues.

Soundofmusic52 profile image
Soundofmusic52

Same as everyone else it is a long and slow slow time you will go through I have been diagnosed over 2 yrs now I am still not on right med s but 10 times better than I was life will never be the same but be positive never give up their are lots of people children worse off than us when I have a good day I make the most of it stay safe x keep your sprits up

Windonmyface profile image
Windonmyface in reply toSoundofmusic52

It’s so true that lots of people are far worse off than I am! It’s encouraging to hear that you are 10 times better now than you were, even if things aren’t perfect.

sylvi profile image
sylvi

Steroids are ok in the short term, but not long term and one or my gps at the practice calls them the devil drug.. I won't take them now and no matter how bad the pain i won't take them, why you ask , well for a start they piled the weight on me(though i was on them for years before i became aware of the damage they do) whereby i ended up having weight loss surgery and i went on to lose quite a bit of weight, but the end of 2018 my consultant put me on them during a period before going onto biologicals(another long story i won't bore you with) and what weight i had lost i put back on. They also messed with my head as well which didn't help. So it is on my records especially at the hospital not to give me steroids.xxxxxx

Windonmyface profile image
Windonmyface in reply tosylvi

Man, steroids are definitely not for you! May I ask what strength you were taking when you had those problems? I wonder if even the small amount I’m taking (5 mg) is dangerous?

sylvi profile image
sylvi in reply toWindonmyface

Maximem(spelling has deserted me this morning) at times 30mg and when i came off them 5mgs. Now i refuse to take them and if i do have to take them i won't take them for more than 7days. xxx

Dobcross1 profile image
Dobcross1

Hi - I agree with everything HH says in her reply. I'd add that if you do have to go on MTX please try not to worry too much. I was really against taking it - but it was the only drug offered to me and in the end I gave in. I did have some side effects initially but they wore off and it has really helped me. Like every other drug it does take time though - took about 14 weeks to start to work for me. I use the Metoject pens not the tablets. Hopefully, Hydroxy will help you over the coming weeks.

Windonmyface profile image
Windonmyface in reply toDobcross1

It’s encouraging to hear about your experience with MTX—I won’t be so alarmed if that’s the next step for me. And it’s also good to know that the wait time for these meds to take hold can be looong!

Yes I believe we have all suffered from the above. I have suffered with malaise and both my rheumatologist and myself said it was part of the disease. 4 weeks ago I noticed I was getting worse with tiredness and just not feeling right . ( lockdown made me monitor this as I couldn’t blame work or anything else so I could concentrate on me) and I noticed a pattern that methotrexate did give me a hangover effect but it was lasting 6 days and most days I barely moved or interacted. And unexplained joint pain Now off methotrexate and I’m no longer comatosed .I still have some joint issues but I’m in the land of the living.

Sorry about this long winded reply 🙄🙄 but my point is it could be the medication doesn’t suit you . Keep a diary so can explain everything to your rheumatologist.

Sockknitter profile image
Sockknitter in reply to

Get them to check your B12 levels. I was at the bottom end of the normal range and benefitted from a supplement.

in reply toSockknitter

I did that too but was ok 🙄🙄I’m awkward

Windonmyface profile image
Windonmyface in reply to

Ugh, J1707, your experience with MTX is what I fear—glad you're off it. It’s good/not good to know that malaise is common with RA. I’m sitting here right now having “it”. I’m tired, have been busy all day, but don’t feel comfortable on the couch and can’t relax—nothing wrong with the couch—it’s vague discomfort in my back, shoulders, stomach, etc. etc. Thanks for your input.

StormySeas profile image
StormySeas

Juts a quick reply, I haven't read any of the other posts.

Two things; for me a feeling of great debility and malaise was one of the first symptoms of RA, long before I was diagnosed....

Secondly, steroids can flood you with angst and unease.

It's a long journey, I'm afraid. Stay on top of your symptoms and write them all down. The more you can help the consultant with how you're feeling - a good overview is essential, the better they can help you.

Good luck X

Windonmyface profile image
Windonmyface in reply toStormySeas

Thanks very much for that. I think I too had been feeling “off” for several years before my RA finally manifested itself strongly in my hands, seemingly out of the blue in November. I hope I will be able to go off the prednisone soon.

Not what you're looking for?

You may also like...

Worried Rituximab not working

Hi, I am new to this forum. On Nov 20th I stopped taking methotrexate due to starting rituximab. I...
sweetcandy profile image

Changing from methotrexate and prednisone to methotrexate and hydrochloroquine - is this a positive change?

I was diagnosed with aggressive RA in February 2019, placed on prednisone, tapered to 5 mg while...
Nocciola profile image

How long to stop methotrexate when you have shingles.

I'm 81 and on 22.5 mg Methotrexate self-injected once a week plus 200mg daily of...
Jeff1943 profile image

Questions about Drug Effects

Hi Everyone, I’m sorry to bring up an issue so often discussed on this forum, but it would help me...

hydroxychloroquine - what's the point?

An update! Was on hydroxychloroquine for a few months but things seemed to be getting worse so I...
Brychni profile image

Moderation team

See all
KateL-NRAS profile image
KateL-NRASAdministrator
Donagh-NRAS profile image
Donagh-NRASAdministrator
Nicola-NRAS profile image
Nicola-NRASAdministrator

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.