I have been keeping a low profile since my diagnosis in August 2020. Reducing from 20mg of Prednisolone down to 9mg. However although the symptoms are now fairly mild I have been feeling generally tired with muscle discomfort in my hands, especially my left hand and my thighs in the mornings. This largely disappears by mid afternoon only to return again next morning. As the discomfort in my hands and legs seemed to be getting worse I increased the Prednisolone to 10mg for the last week and that seems to have helped. I had a Video appointment with the specialist today (unfortunately a pretty poor reception so difficult to discuss) who thinks that I should be on a lower dose of Prednisolone by now and as I have an increased CRP at 12 suggested that I go onto Methotrexate to assist in the reduction of Prednisolone. With the side effects of Methotrexate and having only been on Prednisolone for just over six months, I wonder if this is a bit soon? Any advice would be most welcome.
Addition of Methotrexate?: I have been keeping a... - PMRGCAuk
Addition of Methotrexate?
I'm just offering my support to you and I know PMRPro and DL will be able to give you more concrete advice. You have my compassion as you find the right combination. Take care💖
Hi,Certainly it seems a bit early to me after just six months. I started to get "hand" problems after 18 months, and just increased my pred from 5mg to 7mg following advice from this forum. It worked for me.
Good luck.
Paddy
Very quick reduction.....not sure why Rheumy is in such a rush. Do you have other health issues which the Pred may exacerbate?
If you feel better on 10mg, then give that a bit longer to really stabilise situation.... and would suggest the increased CRP is because you had gone below the level of Pred your illness actually requires.
Are you due for another blood test to check if result was just a blip?
Personally I would stall on the MTX, and once you feel your illness is back under control consider 1mg reductions every 2months. Either 1/2mg every 4 weeks, or 1mg every 8 weeks - whichever suits you best - provided no issues....
...if queried by Rheumy, this is action recommended in guidelines.
Thank you Dorset Lady. No I don’t have any other health conditions except a couple of Turps and watching my PSA which I don’t think is relevant. No more blood tests at the moment. The Rheumy was looking at the test I had a week ago. She is very nice and approachable but it was difficult as we had a very bad connection and could barley hear each other. Armed with your experience I’ll try and contact her again.
Well, I'd say no! But my experience with mtx wasn't pleasant!
rcpe.ac.uk/journal/issue/jo...
with this approach you would stay at 10mg for a year and that is where you would be at present - and it is being used by a consultant at Luton. Her patients think she's the bees knees.
I do wish I knew why they think all patients are the same, that all PMR is the same and they can use a one size fits all concept when every single recommendation in the medical literature emphasises that the taper must be adjusted to suit the patient ....
Information and Tips from Professor Dasgupta, read No 10.
I agree with you. This is far too soon. PMR lasts between 5 and 6 years on average. The aim of tapering is to get to the lowest possible dose that relieves your symptoms. Anything else is likely to lead to a flare. You can find advice on tapering to the right of your screen.
Hi Pinkly, my husband was diagnosed at the same time as you, last August. His Rheumatologist gave him a dose regime to stick to as he was on 70 mg to begin with. Last weekend he started 10mg, for a month, then down to 5mg for the forseeable future. Rheumy says he will be on Prednisone for 1 - 2 years at low dose, less than 5 hopefully. He doesn't seem to have any symptoms, (other than fatigue) but he also had a stroke caused by the GCA so we are fighting two problems as far as that goes and CRP is 2.6. Your reduction does seem a little fast to me. We live in France so have French doctors, so I hope this helps. Good luck and bon chance!!
Hello, Pinkly, I had a similar suggestion from my rheumy because I’ve had difficulty getting below 10 without flare ups. But when I read about methotrexate on MedlinePlus (the layperson’s version of the medical research engine), I decided against it. Here’s the link if you want to read more:
medlineplus.gov/druginfo/me...
But basically it says only to take it if you have cancer because of the potential serious side effects. I know some people on this site have not had any issues and have been helped by it, but for myself, I figured better the devil I know.
What my doctor offered for this recent flare up (I made it to 10 again but have been in pain with right hip and left shoulder, and since I sleep only on my side, it’s been a challenge) was a steroid injection, which I got yesterday afternoon, and this morning, for the first time in over a month, I slept through the night without waking in pain, and I’m feeling pretty great and ready to start the next reduction.
Best of luck whatever you decide!
The doses for cancer are far, far higher than the low level doses used in rheumatological conditions. It has been used for RA for probably 40 years and has a very good record. The majority of the worse adverse effects are associated with its use in cancer.
Scrappy,
As PMRpro has mentioned Methotrexate was originally used (& still is) as a Chemotherapy Drug at much higher levels, as a *DMARD for *RA & other auto-immune conditions plus as a Steroid Sparer in PMR the dose is is considerably lower.
As someone who has been treated with Chemotherapy & has also taken *MTX the difference in side effects are so far apart. MTX is a Cytotoxic Drug & not without its issues but is considered The Gold Standard Drug in RA & not to be confused with the doses used for Chemotherapy.
Regards
MrsN
*DMARD - Disease Modifying Anti Rheumatic Drug
*RA - Rheumatoid Arthritis
*MTX - Methotrexate
Just to add to the chorus, you haven't been on pred all that long, you may be having a bit of a flare because of increased PMR activity, or a slightly too ambitious taper. Also we have to remember that some people metabolise pred better than others. Some may get close to the benefit of the whole dose, others as little as half, with anything in between. Also body size can make a difference. And I wouldn't go near MTX this early on. It should probably only be considered after a couple of years with a patient who has been finding it impossible to get to 5 or so and may (nothing is guaranteed) benefit from a DMARD like MTX - just my opinion, though.
Thank you. Very reassuring. Clearly the aim is to get off of Pred asap but a certain amount of patience is required I think.
I would tweak that statement slightly. The goal is to find the lowest possible dose which still controls the symptoms effectively. Getting off pred altogether is not in our hands, unfortunately. I have always had a very ambivalent attitude towards pred, and that's still true after several years. Have a read of this, written long ago, but there's not much I'd change....