Need advice: Rheumatologist wants me to take... - PMRGCAuk

PMRGCAuk

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Need advice

Grammajoy profile image
15 Replies

Rheumatologist wants me to take methotrexate as labs show RA. It seems prednisone is also used to treat

RA and I do not want to take both. I have appt with new gp 12/5 so think I will see what she says. I know I will get best answer right here🤔i

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Grammajoy profile image
Grammajoy
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15 Replies
SheffieldJane profile image
SheffieldJane

I would go on to the National Rheumatoid Arthritis website where there is a section that tells you about Methotrexate. There are pros and cons - it is the gold standard drug for the treatment of RA. It is proven to prevent it from getting worse and to reduce the danger of heart problems. However it does have nasty side effects for about 30% of users.

You'll need to do a lot of reading. Perhaps take a little notebook with you when you next see your Rheumatologist, with questions you want ask then make a note of the key things you are told. Especially what they have to say in relation to PMR - if you have it. It may have been RA all along. You will still need to taper Pred to come off it. You may need it for pain and inflammation, I just don't know.

Let us know how you get on.

PMRpro profile image
PMRproAmbassador

Pred can manage a lot of RA syptoms. But the methotrexate is what is called a DMARD: Disease Modifying Anti Rheumatic Drug. That changes the actual disease process and limits the damage the RA can do to the joint linings and is what used to cause such deformity and disability in RA.

As SJ says, sometimes LORA (late onset RA) is confused with PMR and about 1 in 6 patients has a PMR diagnosis revised to be LORA. It isn't the doctor's fault - it is next to impossible to tell from symptoms. And it is perfectly possible to have both.

Methotrexate is the first line approach for RA and for most patients is a good answer, really the people who have bad responses are in the minority. I would never encourage someone with PMR doing well on pred to add mtx - but if there is a suspicion of RA, that is a different matter altogether. If mtx doesn't work, they move to the next on the list. It is a requirement with a lot of insurers to work through them to get to the biologics at a later stage.

If your rheumy is confident you have RA - give it a go and see how you get on. If it makes you unwell you can stop immediately. It isn't like pred where you have to taper.

Grammajoy profile image
Grammajoy in reply toPMRpro

Thanks for explaination. Right now I am on Duluxotine which is next to impossible to come off, and prednisone so until I can ditch the Duluxotine I can't add anything to the mix. My vision improves slightly at 50 mg pred. Is it possible to have PMR, RA and GCA plus osteoporosis, COPD and spinal stenosis with a severely deteriorated spine😁😜? I'm sure it is but I am grateful I don't have any cancer!!

PMRpro profile image
PMRproAmbassador in reply toGrammajoy

Now I can understand why they don't want you to try mtx while you are still on duloxetine (both bad for liver), but there are other DMARDs that aren't hepatotoxic.

It is VERY possible to have PMR and GCA, they are fundamentally the same disorder in some cases and PMR can be one of the symptoms of GCA.

Does the duloxetine do anything useful? Does it help any of your pain? I do wonder why they are so terrified to use pred which has far fewer problems really that becoming dependent on duloxetine - though I have a horrible suspicion that a lot of doctors aren't aware of that little gem!

Grammajoy profile image
Grammajoy in reply toPMRpro

Duloxitine is pain/anxiety relief but how does one ever know what helps? I accidentally went cold turkey once and the results were disastrous . The manufacturer has been sued multiple times as there is no way to step down. I am trying every other day and going to wait for appt. with new primary care to do more. Thanks.

PMRpro profile image
PMRproAmbassador in reply toGrammajoy

Some doctors are convinced it works as pain relief in various conditions including PMR and will try it - it does NOTHING for PMR. But don't get me started on big pharma and their fairy stories...

Grammajoy profile image
Grammajoy in reply toPMRpro

My husband is retired pharmacist and don't get him started either

PMRpro profile image
PMRproAmbassador in reply toGrammajoy

ARTE had a programme about the cholesterol fantasy last night...

GerriMc profile image
GerriMc in reply toPMRpro

Must look that up!

PMRpro profile image
PMRproAmbassador in reply toGerriMc

Not sure if it was a new one - I saw one last year, but I thought this had new stuff...

4683Louise profile image
4683Louise in reply toGrammajoy

My husband's a chemist.... same deal.

Zampalion profile image
Zampalion

Have been on methotrexate to help to reduce pred. Down to 1mgs per day had pmr5years now. Taking 8mgs. Per week of mtx plus folic acid tab have regular blood tests, no side effects so far.

Grammajoy profile image
Grammajoy in reply toZampalion

I have not posted in awhile and don’t know what to ask. I agreed to mtx 3 weeks ago and am on 4 tablets weekly plus 5mg prednisone and 2mg folic acid daily. Mtx causes extreme fatigue, loss of hair, back ache and I still have vision problems, bruises and wrinkled skin arms and legs. I don’t know how to get definite dx instead of 3 “possibles”PMR,GCA and now RA. The fatigue and difficulty walking are making life difficult. Any suggestions appreciated.

PMRpro profile image
PMRproAmbassador in reply toGrammajoy

"I don’t know how to get definite dx instead of 3 “possibles""

Nor probably does your doctor - there are many overlaps between all 3 of them and no definitive test for any unless you are "lucky" enough to get a positive biopsy or ultrasound diagosis and they depend on the GCA being present in the small bit of temporal artery accessible to the operator.

You may find asking your doctor for a bigger dose of folic acid may help.

Leeleep profile image
Leeleep

Try for Actemra.

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