Methotrexate

[Toobusyforthis]

Hi all I’ve been on prednisone (steroids) for a few months when 2 weeks ago returned to see my Rheumatologist and she said after the last lot of bloods taken she suspects I have sjorgern syndrome and wants me to take Methotrexate now, but I’ve read about this drug and really don’t want to take it , it says it’s a form or chemotherapy?? Is anyone on here on this? I would be grateful for some feedback kind regards all

[PMRpro]

There is a set of links about MTX in the FAQs on the PMRGCAuk forum - but most are in the context of being a steroid sparer for patients with PMR. Taking it for Sjoegrens is another matter. It was originally used for chemotheray but the doses used in rheumatology are far far lower so the warnings and adverse effects experienced when it is used in cancer therapy are less relevant to us.

It is something you need to try, some people get on fine with it, some don't and unless you try you don't know which you are. For me it caused extreme fatigue and my hair fell out in clumps, MrsNails OTOH has been able to reduce her pred dose considerably and having stuck out the initial wobbles restarting it is now doing well on it I think. If it isn't PMR but Sjoegrens with a polymyalgic presentation, you might even get off pred.

[Toobusyforthis in reply to PMRpro]

Thankyou so much for your reply , oh I see, it’s not as bad as I thought . I am down to 2.5 mg of prednisone tho ? Is it not safer to stay in a lie dose of Pred? Xx

[PMRpro in reply to Toobusyforthis]

MTX is a DMARD - it has other effects on the disease process. I'm not sure how much joint involvement there is in Sjoegrens - did know once a long time ago, would have to look it up again.

nyulangone.org/conditions/s...

Do you have joint pain? I was a bit surprised she wants to start with MTX

[Toobusyforthis in reply to PMRpro]

Yes I do hips shoulders neck , arms ..etc ..she started me on Hydroxychloroquine but I had a severe allergic reaction so this is the alternative I suppose xx

[PMRpro in reply to Toobusyforthis]

It is - answers my question!! All the best with it - takes time though

[Toobusyforthis in reply to PMRpro]

Thankyou I clicked on the link you provided very informative and made me feel a heck of a lot better ..don’t know how I’d cope without your knowledge Thankyou xx

[PMRpro in reply to Toobusyforthis]

It is just a case of knowing how and where to look - plus knowing what is junk and what is likely to be reliable

[Tanitani]

I tried it a couple of times. It didnt help me nor did it hurt me. There are other immunosuppresants available. Methotexate is very old and blunt. Ask to be considered for other medication as a first choice

[Tanitani]

Also you didn't try anything else except steroids? The mildest and very good medi ation is hydroxychloroquine. You should only atart with heavy immunosupresants after hydroxychloroquine didnt work or you cant take it. For this medication you need an eye exam.

[Toobusyforthis in reply to Tanitani]

Thank you and yes unfortunately I had a severe allergic reaction to Hydroxychloroquine x

[Kath1]

Hi, when I started methotrexate I was given tablets, you take them on the same day each week and you might be given folic acid to take the day after (this is because methotrexate takes your natural folic acid away) I recommend taking them before bed and make sure you have had a nice dinner, don't take them on an empty tummy and drink lots of water. Methotrexate effects us all differently, some people get on really well with it, some don't. For me the tablets made me feel sick the day after and I couldn't get on with them so I was switched to injections but lots of people get on with the tablets. I currently inject 15mg a week, it comes in a pre filled pen so it is easy to to and it doesn't really hurt. The day after I don't feel my best so I do my injection on a Tuesday because Wednesday is a quiet day for me and I can take it easy if I need to. I then take folic acid every other day of the week (never same day as methotrexate). Just know that methotrexate is something you need to get used to and that your dosage (methotrexate and folic acid) can be adjusted accordingly to how you are getting on. For me it has worked brilliantly, my joints and fatigue are so much better! I wish you all the best with it.

[Toobusyforthis in reply to Kath1]

Thankyou I feel so much better now, I did panic when I read it was a cancer treatment. Can I ask you , did your hair thin? Xx

[Kath1 in reply to Toobusyforthis]

Hi I was told hair thinning or loss was possible but thankfully that hasn't happened to me. The main issue I have is being more vulnerable to colds etc but the benefits of better joints and less fatigue outweigh that. Also any flares I do have are not as bad and a lot shorter than before methotrexate. I hope it works well for you

[Toobusyforthis in reply to Kath1]

Thankyou I’ll keep you posted xx

[HazelW]

I have been on Methotrexate for several years now & swear by it. Doesn't suit everybody of course, but it's been a godsend for me.

[Toobusyforthis in reply to HazelW]

Really?? Oh that’s good news , I’ve been very concerned..have you had many side affects? Xxx

[Christineosh in reply to HazelW]

This is so true as you take anything up to three months to get to 2500 which is the optimum dose. With blood tests. Some people find it a wonder drug, I never felt much better. Each of our bodies are so different, weight, height metabolic rate and how our bodies react to Lupus.

[Toobusyforthis in reply to Christineosh]

To be honest I’m confused as to what my total diagnosis really is. My Rheumatologist said could be lupus but thought it was Polymialgia…now sjorgerns syndrome …🤷‍♀️ Xx

[Christineosh in reply to Toobusyforthis]

For get them. Tell you a joke I started Lupus covered over night with scelerdmia on my arms and legs. Having seen 5 Demertologists I wrote to them how many does it take to spot a spot. I went finally NHS a wonderful French lady who used PUVA treatment ( marvellous for Psoriasis) but not for me. I think you have Lupus and yes sent me to a private specialist. In the end of this from 2006 till now I have tried the lot. I am in London and the Lupus centre I have seen has many of these experts. They pass you from one drug to the next, according to them we all have Sjourgon , just mention dry eyes , there you are, another label.I keep going with riddled Lupus cells showing up everywhere not least lungs in Organising Pneumonia and 40 steroids for too long. Glycoma, endless thrush in VJ and mouth and urine infections.

Now down to 10 and take no other drugs. Side effects are dreadful from most of them.

So sorry this is very glum, I am actually very positive but have learned when I need to slow up or rest

[Toobusyforthis in reply to Christineosh]

Your right lol ..this will be the 3rd drug already and 3rd diagnosis By the way , Thrush ..jeez ..yes …what’s all that about ..mouth and under carriage lol 😂 whatever next! Just don’t have a rash, which bewildered my Rheumatologist 🤷‍♀️ …onwards and upwards ..xx

[HazelW]

No side effects at all.

[Toobusyforthis in reply to HazelW]

Wow that’s fab x

[Knit11]

I refused Pred due to side effects and difficulty to get off it. My rheumatologist put me on MTX and I am gradually getting better. No side effects so far (2 months on it). The medication had been created in the 1940s for Psoriasis patients and only later had been put into use for arthritis and some forms of cancers. The advantage is that doctors know how to follow patients and which markers of blood work raise alarm in case of side effects. So no need to worry if you see your doctor regularly. Also, if you need to stop taking it you just do (unlike Pred). Good luck!

[Toobusyforthis in reply to Knit11]

Phew Thankyou xx

[BaltimoreMDgal]

Hi!

First, Toobusyforthis, I love your name!

I’m a 62 y o woman, in the States, and in a similar situation. I started to see a rheumatologist 2.5 months ago, and was immediately put on 10 mg. Prednisone. Two weeks later the blood labs confirmed SLE, and I was started on 400 mg HCQ.

The Prednisone has been wonderful, but’s it’s not a long term solution, so now I’m weaning off.

The rheumatologist assured me that if I did not do well without Prednisone, he would prescribe MTX to “fill in the gaps.”

I’ve been a week on 7.5 mg. Prednisone. I did have a day with some SLE-type weird discomfort last week (joint pain), but then it resolved, thank God.

(I also have recently-diagnosed with anemia, and have started eating red meat after 27 years. Last week I also started taking B12 and Folic Acid. My normally thick hair thinned quite a bit over the last few months, so I am looking forward to its return to fullness and health ... )

So this discussion is on-target for my concerns.

Thanks for all who posted ... You re-assured me, in addition to Toobusyforthis!

I’m glad I found and joined this group!

Wishing everyone good health and freedom from pain!!!!

[Toobusyforthis in reply to BaltimoreMDgal]

Ahh glad to be of some help..it’s a long journey we are all on but thankfully we can all give each other support with this lovely lot! Glad you like my name you can probably relate xxxxx