Methotrexate. After 2 yrs on Hydroxychlorine, with no... - NRAS

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Methotrexate. After 2 yrs on Hydroxychlorine, with no obvious benefits (my hands and feet continued to deteriate and I had Shingles 18mths)

KatieA profile image
9 Replies

My new NHS Rhuemy has prescribed Methotrexate & Folate.

However, I am B12, Iron, Vit D and Calcium deficient and consider myself to have a low immunity. The nurse rang 24hrs after my last appt. to say I have abnormal liver blood test and to delay taking Methotrexate until the LVTs are normal, but I'm concerned about catching infections (or worse Shingles again) thru the Winter. What is the general view of the effectiveness of Methotrexate?

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KatieA profile image
KatieA
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9 Replies

Hi, I take Hydroxy and MTX and Sulfasalazine. We are all different, many people find MTX to be very helpful and some can't tolerate it at all.

Truth is we can not know till we try, but careful monitoring should keep us free from side effects.

Meanwhile can you take anything for your vitamin deficiencies? My daughter has injections for B12. Maybe you should ask your GP for some help.

KatieA profile image
KatieA

Thanks for your reply Phoebe. Re. vit deficiencies - My GP is providing B12 injections and I have been taking a daily multivitamin, plus additional vit D, Calcium and Iron. I seemed to feel less exhuasted initially (pot. due to B12 loading doses), but it was short-lived. I have an appt. with my GP tomorrow and will ask for my Iron(ferritin) to be tested along with my LFTs.

Re. the MTX, I had been under Private Care until this year, but changed to NHS as there didn't seem to be any "support" between consultations; e.g. no Rhuemy nurse, or regular blood tests. I guess I will have to believe the NHS will be better??

Ronnie63 profile image
Ronnie63 in reply to KatieA

Hi Katie

I have been on MTX and hydroxy for 20 months and like you initially was diagnosed and managed privately.mi also tried sulpha but couldn't get on with it. I went into the. NHS in August for similar reasons plus it was apparent that I couldn't tolerate higher does of MTX due to the effect on my ALT. I am currently on 15mg MTX and two hydroxy a day. The max I got to was 20mg MTX. As 15 mg is insufficient to keep it under control in my case, I am currently waiting for funding approval to go onto biologics (another reason for the NHS as insurers won't cover such expensive drugs)

Luckily I had no damage at diagnosis and still no damage, my anti CCP has also reduced over the period I've been on MTX so it has been reasonably effective.

In terms of ALT I had lots of issues with fluctuating levels but was usually advised to reduce by 2.5mg rather than skip a dose of MTX then evaluate after two weeks, that way I wouldn't run the risk of causing a flare up

Your risk of infection is greater when your RA is more under control as your immune system is more suppressed, the fact that you're MTX will mean your immune system will be more active at fighting infection

Sorry this is such a long replying it hope it helps

All the best

Ronnie

Angela123 profile image
Angela123 in reply to KatieA

Hi Katie. I'd be interested to know the difference. I too am a private patient but envy other people's 'chats with the Rheumy nurse' - It can be a bit isolating when your G.P. doesn't want to discuss your RA concerns.

Nildesperandum profile image
Nildesperandum

Hi. I have been on methotrexate since may and it has been really very good for my joints and so far no side effects. On 22.5 mg per week orally. So good news from me x Sally x

helixhelix profile image
helixhelix

MTX has been a wonder drug for me, and I haven't had so much as a sniffle since I started 3 years + ago. I also take sulpha & Hydroxy and the combination seems fine. Polly

I`ve been taking mtx for nearly three years. No side effects at all. Sadly it also does nothing to help my RA.

harryhunt profile image
harryhunt

I've been on MTX since 2009 with HCQ. Now losing effectiveness. Rheumy put me on TOCILIZUMAB (RoActemra). In complete remission after just 1 infusion. DAS <1 CRP <1 ESR 2 Still the same after 5 infusions. Never this good before even after steroids. Hoping MTX will be withdrawn. Toc works without it. So far no side effects or infections. Believe sub cut injection option will be available

denvajade profile image
denvajade

hi there I have been on methotrexate for 7 years, been on injections only recently and find it controls my RA.

I have a lot of other issues that may have been avoided if I had injections earlier. I wish you well with it.

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