RA and activities

[alghamdimanal]

Hi everyone! I have RA and I am on Methotrexate (5) pills a week for about 8 months; however, every time I am trying to walk or use my bike machine I have horrible pain in all of my joints after that mostly starting next dat and I end up in bed for more than four days because I can't move. I am so afraid to get heart disease or become diabetic beside I have put a lot of weight because I am inactive all of this period, but I am wondering is it the medication to cause this pain or the RA disease? Any body experiencing such a condition? I barely can finish cooking the lunch and most of the time just sitting on my chair at work or laying on the couch at home?

[janmary]

It sounds like you need a review of your medication - methotrexate shouldn't be the cause of joint pain, it should reduce it. Make sure you get a quick appointment with your rheumatology consultant or nurse specialist .

hope its better soon and you can return to exercise (gently does it.....)

[alghamdimanal in reply to janmary]

So, I should be able to walk normally with no pain while I am on Methotrexate, many thanks dear for reply;

[Jackadoodle in reply to alghamdimanal]

Once your consultant has prescribed your correct medication there is no reason why you cannot experience a pain free life, you may get the odd twinge but that is something you can tolerate. It took over a year for my medication to take effect to relieve my symptoms, I visited the Rumy nurse every 6 weeks and if I had too much pain I was able to ring the nurse up for advice.

[Beaches2]

Hi

I think it could be a combination of things making you feel so bad at the moment, the main one probably being that you need more effective treatment to get things under better control for you. I would be phoning straight away looking for more help. You are on quite a low dose of mtx and there are plenty of drugs you could add to it which may well improve things.

Once you have things under better control it will be much easier to exercise again and build up your muscles.

The other thing is the amount of time spent being inactive, we loose muscle really quickly if we don't move, and then it's much more of a struggle to get going again and there is less muscle protecting the joints.

Have you got effective pain relief to tide you over until you get things under control? That could help you get going with some exercise.

If it were me, my plan would be to phone rheumy urgently asking for a thorough review of meds and also to phone my GP for effective pain relief while waiting for hospital appt. Then start very gradually on increasing daily amount of exercise.....probably just regular walking to start with trying to do a little more each day.

Hope this helps

[alghamdimanal]

Thank you so much for your advice; my Rheumy physician had prescribed Celebrex as a pain relieve, but it did not work with me; so she prescribed Ibuprofeen; I am trying not to use much of it because I am Asthmatic, but it is the best pain relieve for me.

Even if I walk to the store close to my house, I get pain in my joints; if I hold the bags, I would have awful pain in my hands and elbows joints, I can't even sit in something that's really soft; I changed my mattress, sofas, and the chair in the office.

Perhaps, yea I am on low dose, my appointment is at the end of this month, I will talk to my Dr., but what kind of medication can be taken with Methotrexate could help? So I suggest it to my Dr.

Thank you so much for your reply

[alghamdimanal in reply to alghamdimanal]

Sorry I correct " I can't sit on something that's not really soft"

[helixhelix]

I take weekly methotrexate (20mg or 8 pills) plus daily hydroxychloroquine and sulphasalazine at the top doses. I usually take a 5km walk every day....

I started with methotrexate which helped, but not enough so the other two drugs were added in. Talk to your rheumatologist about reviewing your medicines. A good rheumatologist will know all about the combinations of drugs to help you. And I hope you are also having regular blood tests to check that it is helping control inflammation and not harming your liver.

[alghamdimanal in reply to helixhelix]

Really good to know the medicine combination; the problem is that I don't trust my health provider that much , and that's why I started to ask and find out what others are using and experiencing. You're helping so much guys. Thank you again

[Beaches2 in reply to alghamdimanal]

And my lovely cocktail of meds is methotrexate, 8 tablets, leflunomide which is a similar drug to mtx and a biologic!

Plenty of people on here are on what's called triple therapy to get and keep things under control. Don't worry about knowing the names of the drugs or the various combinations, your rheumatologist will know all about them.

Sometimes we just need to be assertive ( in a nice way) tell them that you can't function the way things are and you need help as soon as possible.

[Paula-C]

I personally think that your dose of 12.5mg per week is low. My consultant told me once that the standard dose is 20mg per week. But obviously I am not your consultant.

Like others have previously stated you need a drug review, because obviously what you are taking now is not enough.

I'm one of the lucky ones and am enjoying remmision thanks to enbrel and mtx. No pain relief required.

If I was you I would get in touch with your specialist nurse or consultant and ask for a review. xx

[oldtimer]

Ask to see the physiotherapist - a RA specialist one if possible- for advice on graduated exercise programme for you personally.

When I had had pain and stiffness for some time, I had developed quite a lot of muscle wasting, made worse by steroids. My muscles were so weak that everything was painful and difficult to do.

I had six sessions in the hydrotherapy pool which were absolutely life changing for me and enabled me to progress to going to aquafit classes with a good tutor who will tailor the exercises for people with disabilities.

I now go to aquafit at least twice a week and can go circle dancing too (as long as I sit down between). I can now walk for just under a mile to the shops and carry a small amount back. That's it for now, but I have hopes of improving from that and it still seems wonderful when I do it. Sometimes it easier than others, but I want to be able to do it.

[alghamdimanal in reply to oldtimer]

Really thanks for you all; I really liked your suggestions and will do so INSHAALLAH

[Kyriew]

I was the same a few months ago but with a dose of steroids and a triple lot of meds I am finding life getting slowly better. As the others say go back and tell them how bad you really are!!!!!!. Good luck xx

[kimberleye]

I was also on Methotrexate for approximately 6 months. Although I had suffered from short episodes of Tendonitis/Tendonopathy prior to taking Methotrexate, taking 4 tablets one day a week has resulted in continuous painful episodes when walking, to the point where my Specialist has now changed my medication. Please speak with your G.P or Specialist and explain how you are struggling with your joints and that you cannot feel any benefit from your medication.

[munchkin]

Sounds like you should be on a higher dose of methotrexate I take 7 tablets a week.

[alghamdimanal in reply to munchkin]

After all of your replies, I think yea I should be on a higher dose

[Hidden in reply to alghamdimanal]

I'm on 20 mg (2 tablets) per week for about 12 months now just recently added Plaquenil for inflammation ..both working quite well haven't had any flare ups for a while now

[alghamdimanal in reply to Hidden]

Perfect!! Thanks dear

[alghamdimanal]

Just to update you; I have visited my Consultant and she put me on Humera one injection every two weeks, and after the third injection I started to feel better and now I almost got my life back with little fatigue sometimes, but I can do my stretching exercises about 20 min in the morning and walk everyday about 30-45 minutes a day on my walking machine at home . Also, I am able to spend more time in the kitchen cooking and cleaning with no tiredness or pain. Really it's impressive ALHAMDULLELLAH which means thanks GOD for having my life back again 🤗

[MandiS]

Hi I also have similar problems I thought that this is just how you are meant to feel with RA I probably have about 2 days max a week when I have tolerable joint pain. Are you all saying that u have very little or no pain whilst taking MTX ? I have days where I can’t move my hand or wrist or jaw ? So what is normal I am so confused I am on 15mg MTX weekly and 2mg predisilone daily. There are days wen I can’t drive or wash up or pick up the kettle is this not normal?

Please let me know.

Thank you

[alghamdimanal in reply to MandiS]

Yes, dear once I started Humera one injection every two weeks while continuing my five pills of Methotrexate once every week all the pain has gone and feel more active now; for example, before when I was on Methotrexate only I could not carry a bag and if I had to, I would cry from the pain that will never go away unless I take some Broffeen; now I feel so much better by almost 85% tiredness wise and 100% no pain; I started to feel better after my third injection; it takes a while until you feel better besides there was no side effects from Humera. So, yea if you are on the right medication, you should not feel pain any more and you should have normal life; this is what I discovered; I really thank everyone here encouraged me to revise my medication because I should not gave a miserable life for ever. Therefore I advice you to talk to your Dr. to start new plan of treatment if you long enough on Methotrexate with no improvement.

Best regards 🌺