Methotrexate Experience.

[horas]

Good morning everyone.

I have been on Methotrexate for 5 months now. I have not really had much reduction in pain from the PMR.

I work as a landscape gardener which is very physical and am only able to manage about 2 - 3 days work a week.

The only thing I have noticed is that it has improved is my recovery time after a very strenuous days work. Before the Methotrexate I would often be in severe pain for up to 4 days after a hard days work and unable to work but now I seem to be able to recover in about 1 - 2 days.

I am not sure if this is from the Methotrexate or maybe the PMR symptoms getting better.

I have had PMR for nearly 4 years now and am on Pred 6mg and Meth 15mg.

I would like to know if anyone else has a similar experience so I can get an idea if it is the Meth thats helping me recover quicker.

[PMRpro Ambassador]

It could well be just you are getting into training - many people find that they can build up what they do considerably providing they go about increasing slowly. As an example, at the beginning of the ski season in December I could only ski a few short runs with a good rest between each and couldn't ski on consecutive days. By the end of January I could ski short runs all morning and by the end of the season could manage longer runs too and ski every day. I had increased by one run at a time and had a longish rest mid-morning, if I skied on consecutive days I did slightly less the first day.

Skinny Jonny took a year to get from a wheelchair to running 5km again:

healthunlocked.com/pmrgcauk...

Read a load of his posts to get an idea of how he managed his recovery.

[jbarie]

Are you certain that your pain is PMR related? At 6 mg. your prednisone is virtually physiologic, have you ever experienced what you're pain would be like if you were off the methotrexate. Yes of course the methotrexate allows you to be on a lower dose of prednisone & of course everyone is different.. but I was diagnosed with PMR in March of this year starting with 30 milligrams of prednisone and have been able to get down to 5 milligrams after 7 months. Since my lower back and pelvic pain may in part be related to discogenic disease or facetogenic arthritis , I am treating my pain as if it's an inflammatory process possibly not related to the PMR per se . Since I am afraid of the long term effects of NSAIDs I've come to rely on anti inflammatory herbal medications such as cercumin, 1000 milligrams per day with bioperine, I am also on rhodiola and Ashwaganda. My lower back pain is virtually completely gone except when I wake up in the mornings lasting for approximately 10 to 15 minutes. Unfortunately I still cannot get below 5 milligrams of prednisone because of symptoms of adrenal fatigue. I probably should go to an endocrinologist to determine whether my adrenals are functioning at all. Good luck on your your search for pain relief.

JBarieMD

[Green_girl]

I found that Meths didn't do a lot for the pain, but if I was prepared to 'punch through' the pain, Meths would help me get there. So it must have eased the inflammation. By pacing myself, and gradually reducing the size of Pred jabs ( I was injected, not sure if that gives a different effect to pills) and then very slowly reducing the Meths as well, I am now off both and PMR-free after just under three years. I do think the PMR has left its mark though and feel stiffer, don't have as much 'staying power' as before and think that arthritic changes have been accelerated.

Not sure if that will help - good luck

[Hidden]

I took MTX from Day 1 with my GCA having previously had PMR on steroids alone. After 18 months I decided to stop it when I was on 8 mgs Pred and 15 mgs MTX to see if it was really doing anything. I got stiffer and sicker and after 6 weeks had to start again if I wanted to function.

So - in my case it is an effective drug - whether as a steroid sparer or an anti-inflammatory. Might try stopping it again when I get to 5 mgs and am stable and symptom-free but I lost 6 months of useful life while I ran the experiment.

[horas]

Hi,

Thanks for your replies.

PMRpro I agree with you that training effect is there. When I start a larger job I find that my ability to function does increase with the pain really starting to kick in later than normal in the day. The pain is still the same intensity but I can carry on working to some degree for longer.

jbarie. Thanks for your reply. I am nearly sure I have PMR due to the reaction I initially had to taking Pred. Within 1 day I was almost pain free and able to function normally.

I am now down to 6 mg as this is just about as low as I can go and still be able to bare the pain. I could go higher and reduce the pain but I have been on Pred for 1.5 years now and worried about long term side effects. On work days I sometimes take a higher dose to get through the day.

Green_girl. Thanks for your reply. The effect you are describing is what I am experiencing. No reduction in pain but much faster recovery after strenuous activity. Before I would have a hard days physical work and often could not get out of bed the next day. I would sort out work so that really hard days were on Fridays so I would have the weekend to recover. Now if I pace myself I am able to recover enough to work the next day.

If you are experiencing a similar effect it probably means that it's the Meth helping me and not just a coincidence of PMR recovery.

Saxjody. Thanks for your reply. I will bear in mind your experience with stopping Meth and try and reduce very slowly when I am ready.

We take these medicines and we all have different reactions to them. Its great to have this web site so we can compare each others experiences and it really helps in making judgements about our own choices.

I hope you all continue to make progress in your recovery and can function as normal soon.

Horas

[Dave7707]

I have noticed from reading the forum that many with PMR seem to have the frustration and resulting pain as prednisone tapering drops into the 6 to 10 mg range.

During my almost 2 years of PMR, I have had a similar issue with increased pain after several flares in the 9-12 mg range. My rheumatologist reviewed my blood tests and the taper rate and recommended that I be on methotrexate (MTX) with the intent that I would stay on MTX for the entire time that my prednisone taper was actively being reduced down to zero. She identified that some of my symptoms developed from my preliminary long term steroid use and that methotrexate would assist me in maintaining a long taper to zero with less pain. She recommended that I step up from 10 to 25 mg of MTX over a couple of months and then stay at the weekly 25 mg level.

I recognize that many do not like the idea of being on a DMARD such as methotrexate but these drugs do dampen down the underlying disease process rather than simply treating symptoms.

I do not appear to have had any side effects (hair, weight, etc.) and thus I think that there is some significant benefit from using a DMARD such as MTX – and the required side dose of Folic Acid prevents some of the side effects.

A mandatory very slow taper of Prednisone along with the MTX it is working well for me. It is now about 18 months since I started with the MTX and I am at the 4.5 mg pred level and all is going relatively well and C-reactive protein and ESR test results are in the normal zone.

One reason that I think MTX has a definite effect is the pain/ache feeling in relation to the day that the weekly MTX dose is taken. Along with the daily prednisone dose, I take 25mg of MTX once a week on Mondays and there is a distinct background pain/ache reduction by Tuesday pm that improves even further during the week, then by Saturday pm and Sunday the pain/ache starts to creep back, and this is a constant occurrence.

I’m sure the MTX is a positive benefit that aids the pred taper process and allows me continue the long, slow taper (which is mandatory) without the horrible pain increases.

Dave