Starting Methotroxate

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I've had PMR for 5 years and treated it for 3 years with Pqrednisone. Started at 15 mg and decreased to 0 the first year. Of course it came back so back up to 15 and this time I stayed at 5 mg. this past fall I had a flare. I was put on a steroid pack for a week and then stayed at 7.5mg until this past Jan byword surgeries after my flare this fall kept me at 7.5. Last week I felt another flare coming. My Rhumy wants me to start Methotrexate this week. He will see me again in June, unless I have issues.

I've read of the side effects. What info can this group give me on what to expect? I want off these steroids!

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  • Posted

    There is mixed opinion of the use of methotrexate with 3 studies showing 3 different things and none of them particularly convincing but the latest EULAR/ACR recommendations for the management of PMR in October 2015 recommend considering its trial in consultation with the patient.

    If you google this:

    "pdf 2015 Recommendations for the Management of Polymyalgia Rheumatica A European League Against Rheumatism/American College of Rheumatology Collaborative Initiative Christian Dejaco,1 Yogesh P. Singh,2 Pablo Perel,3 Andrew Hutchings,"

    it should come up as one of the first couple of links in the list as a pdf version which you can read "free to air". It is a bit complex.

    Use of methotrexate is in Recommendation 7.

    Being on MTX will not guarantee you will get off steroids - it may mean you can manage with a lower dose and are less likely (maybe) to have a flare in the future. It does not usually replace pred, they are used together for PMR. Some patients do manage to get off pred - but there is no hard and fast evidence that these are pure PMR patients, there is an overlap with LORA (late onset RA) and it may have been a mistaken diagnosis as they present very similarly. It is difficult to tell. MTX doesn't appear to reduce the pred side-effects in the long term - but you can read that.

    I appreciate that you, like very many others, want to get off steroids. However - the reality is that there is at present no reliable alternative in managing PMR or GCA. MTX may help you, it may not. You may have side effects, you may not.  If it works and you have no side effects then fair enough. The only way to find out is by trying. And if at any time you develop GCA symptoms then you will need pred.

    It commonly causes nausea and many patients find they have a sort of "MTX flu" for a day or two after taking it (once a week dosing). The nausea can often be circumvented by using injections which you are taught to give yourself. 

    If you want opinions about what it is like taking MTX as a drug you will get far more into on an RA forum because not that many patients with PMR do end up taking it.

    • Posted

      I've read quite a bit about Methotroxate. I also see a lot of side affects. Not too happy about that at all. I picked up my prescription but kind of apprehensive about starting it. I will think about it I guess. I did google it after I picked it up. Humm....
    • Posted

      I think the apprehension is probably the biggest obstacle to overcome. If you have it, try it. Many people have no side effects, it may help you. The only way to know is to have tried it. If it makes you feel unwell you can stop and then you have some grounds for discussion with the rheumy - because some have been known to throw their toys out of the pram when a patient has said no without good grounds.

      You say he will see you in June unless you have issues - he has arranged for the appropriate blood tests to monitor you I hope? Liver function tests are particularly important, together with a full blood count, urea and electrolytes and urinary protein and blood. They should have been done before starting the tablets too. They are important to avoid some of the potential side effects.

      And you do have folic acid to take on the other days? They are also important to avoid some of the side effects, particularly the mouth ulcers.

      https://patient.info/medicine/methotrexate-maxtrex-metoject

       

    • Posted

      I did not have a liver function, test but had a full blood count in Nov for my 2 surgeries. Plus, he took more blood work this week before he prescribed Methotroxate. I have yearly endoscopes for my liver and pancreas.

      Had the last in Sept 2015.

      I'll give it serious consideration. Thank you.

    • Posted

      A liver function test amongst others before MTX therapy in RA (and PMR is little different) is regarded as mandatory by most experts and are certainly done by most doctors:

      "...The investigations that are mandatory before starting methotrexate therapy in a patient with RA consist of a full blood cell count, serum transaminase levels, serum creatinine with computation of creatinine clearance, and a chest radiograph. In addition, serological tests for the hepatitis viruses B and C and a serum albumin assay are recommended. In patients with a history of respiratory disease or current respiratory symptoms, lung function tests with determination of the diffusing capacity for carbon monoxide are recommended; 6: Investigations that are mandatory for monitoring methotrexate therapy in patients with RA consist of full blood cell counts and serum transaminase and creatinine assays. These tests should be obtained at least once a month for the first 3 months then every 4-12 weeks; 7: Folate supplementation can be given routinely to patients treated with methotrexate for RA. In practice, a minimal dosage of 5 mg of folic acid once a week, at a distance from the methotrexate dose, is appropriate..."

      Personally I wouldn't take it until they'd been done - they are hardly difficult or expensive. It is possible they did them in November but that should be checked and the monitoring ones need to be sorted out.

    • Posted

      Gosh, I hate to ask... But since you mentioned the folic acid...

      Went to Rheumy Monday. I had blood tests done here in my small town verses the more well known blood labs. 

      The liver/kidney tests said "chronic kidney disease stage" 

      This has not been flagged before. At first liver was flagged, but I stopped drinking for most part. Liver levels went back to normal. This over last 7-8 months. This is why Sulfasalazine vs the methotrexate.

      I looked at my copies of labs I have and saw numbers are same, (bun 21, eGFR 65) but one lab said it now uses a different calculation. I'm thinking my small town hospital is using an older calculation.

      Anyway... The PA (at my Rheumy) prescribed Leucovorin Calcium (folic acid?) 5 mg once week as you mentioned above. 

      I'm trying to research it, I'm on Sulfasalazine vs. Methotrexate.

      I feel I don't have symptoms of low folic acid I see listed, I eat greens, mushrooms, eggs weekly. Should I trust this medication too?

      Her comment was something like "is it the Plaquenil, the Sulfasalazine?" Like she didn't know. Just said we will retest in April. 

      Ugh, more meds... Should I or shouldn't I? 

    • Posted

      No reason not to take it - it's commonly given to women wanting to conceive. It's just like any other supplement and might improve your hair wink  Sulphasalazine can cause the deficiency too so it is probably that - the drugs interfere with some enzyme or other (off the top of my head) so you simply need more to avoid developing it. 

      Your eGFR is CKD stage 2 which is pretty much normal for people of our age. There was fury amongst specialists when it was added to the standard reports - nurses and some GPs don't get it and so patients are told they have "kidney disease" when they absolutely don't - but of course they then worry big time. 

    • Posted

      Thanks so much!! Could use hair improving!!! wink 

       

    • Posted

      There you are then!

      It occurred to me afterwards - I should have asked what you would have said if she had said take extra vit C????????????

    • Posted

      Thank you, thank you, thank you......i had the same thing happen

      when regular blood tests taken....scary to see results say

      "chronic kidney disease"  My doc went over it with me and

      wasn't concerned at all.  Glad to get another take on

      the results.....my doc kept saying "for your age"  and

      don't we love to hear that?

    • Posted

      Layne, worry not about being labelled with CKD Stage 2 - as Eileen has said a reading of eGFR 65 applies to most of the generation over a certain age!  I have Stage 3 (eGFR 41) which unfortunately is continuing to deteriorate probably due to difficult-to-control high blood pressure and also to many of the drugs used to treat the high BP.  Into the bargain, I only have one kidney.  I was told by one consultant that the name Chronic Kidney Disease is unfortunate in his opinion but it was so named by the Americans and we have to live with it! 

      When my friend discovered that her kidney function was reduced at eGFR 60, her GP followed up by saying that the Government had introduced a can of worms with this test in the hope of discovering whether reducing kidney function was either a disease process or simply an ageing process.  He said the result was 100's of panicking patients rushing off to renal consultants.

      ​I hope that puts your mind at rest at least as far as your kidney function is concerned.

    • Posted

      Yes - I should have said that it is a figure they work out on the basis of other tests and they thought it would be a good way to get info about population statistics easily. The objection was it shouldn't be added to the results sent to the GPs but kept for specialists and records. 

      and although MrsO's friend had a GP who understood, many don't and practice nurses are even less aware.

      The figures assume 2 fully functioning kidneys - obviously only having 1 will reduce the volume that can be filtered and the figure falls even though the renal function is perfect. 

    • Posted

      Thank you all for comments on the kidney thing. And clarifying my ignorance on the Leucovorin Calcium. I wasn't getting very far when researching.

      wink

      They also wanted to start me on daily injections for the osteoporosis, but I'm not going to go there just yet. There is no osteoporosis in my family and being an ex-runner I'm surprised.  Might have been since I was taking the calcium at same time as the Prednisone but not sure that would have caused osteoporosis that quick??? 

      At 54, I'm going to make the most of my life with this temporary setback and lessons.

      Just weird going from only taking low dose thyroid pill, the only pill I've ever needed (and that's questionable) and now all these others. wink 

      So like many of us, we try to keep it at a minimum. Glad we are smart and look out for each other! 

    • Posted

      I've never needed pills for a chrinic condition until pred.  BTW you should, if you haven't already, have that thyroid med assessed as apparently pred can affect dosage required.  If you start to have untoward symptoms it may be because the thyroid med needs adjustment.
  • Posted

    We all want off pred.....I'm getting pretty discouraged.  I'm going to be

    79 in a few days and really don't think I'll ever get off them.  I just

    tried going down to l6mg from l7mg and back came the shoulder

    wrists and groin pain.  Back up to l8mg to make sure I get a handle on it   I'm trying the Dead Slow/Stop routine this time and see if It helps.

    I think you just have to stay on the preds and not reduce too quickly.

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