rheumatoid arthritis advice

[soreandsorry]

My husband has been on the current regime of medications for 4 years and to date nothing has improved - his flare ups include swelling of his feet and hands, jaw pain (which makes it almost impossible to eat) and lack of energy. As a result of the rheumatoid arthritis he spend three weeks in hospital with a pleural effusion, pericardial effusion and pneumonia. The only medication that seems to make a difference is the prednisone - which cannot be taken long term - in 4 years of treatment his CRP levels have never improved - suggestions

[sylvi]

Go back to your rheumy and tell them whats going on with your hubby. xxxxx

[rab1874]

I would echo what Sylvi says go back and tell your Rheumy the treatments not working xxx

[Hidden]

Echoing what’s already been said, go back to see your rheumy. Has your husband not been seen in those 4 years?

I took pred long term but it’s not advisable as it’s taken me years to get off it.

[helixhelix]

What is his current regime of medications? And what is his DAS score? If his CRP is elevated and he has a high DAS score then if he's not already tried them then perhaps you need to discuss with the rheumy moving on to biologic drugs.

[nomoreheels]

Hiya soreandsorry. Has your husband's Rheumy not been involved at all since his hospital stay? As others have said it sounds as though he needs reviewing, being undermedicated & allowing the disease to run rife could well be the reason for the build of up fluid on his lungs & heart & resulting pneumonia. I'd expect in his position a complete med review should be done & soon. When is he down to see his Rheumy next? If an appointment isn't imminent I'd be pushing for him to be reviewed pdq.

How often does your husband see his Rheumy? As he's been so poorly controlled for so long it would appear he's either not seen regularly enough or for whatever reason his DAS 28 score isn't showing the real picture. What does his Rheumy say about the fact nothing has improved & his symptoms? Which meds is he taking & are the doses altered at all in an effort to control him better? Do you attend his appointments with him? Sorry for all the questions, it just seems odd that this has been going on so long.

Do you know if your husband's Rheumy has even been made aware of his recent admission? His GP will as he'll have given him his release notes but it's equally as important his Rheumy is included.

I hope he's now feeling better than he has been & that whichever regime he's changed to makes all the difference for him. Keep us updated?

[AgedCrone]

Have you thought of asking for a second opinion from another rheumatologist?

RA drugs can take a long time to work, but 4 years with no change in treatment when your husband is so poorly is unacceptable,

[Hidden]

I am in the same position. Been on Mtx, hydrocloxiquine and a low dose of prednisolone plus tramadol and morphine patches for pain for seven years now and during that time, I have got much much worse. I have changed my rheumy twice and just seem to get nowhere. I am sero-negative and that doesn't help. Each one says that I have OA as well so that is why I am in pain and they say that the Mtx is working. I just feel like I am banging my head against a brick wall.

When I think back to say about seven or eight years ago, I was in pain, but could still go into town on a bus and go round on my own and walk to the local park and do normal things although with pain. Now, I can't go out without my husband and a wheelchair or a mobility scooter, I can't dress or undress myself, get in and out of a bath or do any housework at all.

I see my rheumy about every six months or so and she insists that I haven't failed on Mtx. I am sorry that I can't be of help to you but I just wanted you to know that I am in the same position.

[turtlemom2]

Actually at this point after four years I would be questioning if this is the correct diagnosis and seeking a second opinion.

[Carleyjean]

I wish I had some advice. This disease has ravaged my husbands body. I don’t know why it is so much worse for some. My husband just started humira along with his methotrexate. He has taken the prednisone along the way which literally helps for a couple of days only. He started with swelling in one knee for 6 months, had 4 surgeries in that one, now both elbow are swollen and his “good” knee has started swelling like his bad one. He will be wheelchair bound soon if the humira doesn’t help.