Any experience of Methotrexate please?

[Bruffingtons2]

About to change med to Methotrexate.

Anyone with systemic sclerosis give me any info on their experience with this. (Mycophenalate not been doing any good for my blood readings.... despite titration... up and down dosage!)

Thank-you all and keep inside and active as you can!

P.S Had 1st Covid 19 and no side effects glad to report.

Aware it may not give me complete immunity....

Bruffingtons2

[MilkMaid]

Are you taking methotrexate tablets or injections?

[Bruffingtons2 in reply to MilkMaid]

Hello Milkmaid.Thank you for your reply.

I would imagine its tablets because of the pandemic...

Bruffingtons2

[MilkMaid in reply to Bruffingtons2]

I have been on methotrexate now for 4 years and although it took several months to have any effect I wouldn't be without it now. Hope it works for you

[Bruffingtons2 in reply to MilkMaid]

Thank-you Milkmaid!I have read many negative posts here about it for others....but been on Mycophenalate for few months now and my blood tests have been going all over the place, although no side effects fortunately and i am comfortable taking it for that reason.

Always a dodgy start with taking a new medication ...particularly as I fortunate as haven't taken medication in my life at all!!

They have tried lowering and upping the dose but are planning to change me to

Mexotrexate next week.

thank-you.

Bruffingtons2

[Nnms in reply to MilkMaid]

Please what has taking he medication done for you? What did it stop or what did it reduce or cure? What symptoms do you have now that tells you you need the medicine? Just asking, me too have been on it for about 18 months.

[MilkMaid in reply to Nnms]

Hi Nnms, I have cutaneous scleroderma not systemic so skin involvement only. Below the knee my legs were almost rigid with swelling, lots of morphea patches on arms and back. The methotrexate has reduced nearly all of the swelling. Fortunately very few side effects either.

[Nnms in reply to MilkMaid]

You are so blessed. Glad to hear your treatment is going on well.

[Bruffingtons2 in reply to MilkMaid]

Good to hear that MilkMaid. My lower legs and arms are as hard as wood!Fingers puffy and swollen.

Good to hear that Methotrexate has helped you as many negative comments

about it on site.

Bruffingtons2

[MilkMaid in reply to Bruffingtons2]

Take care not to take folic acid on the same day as your methotrexate Bruffingtons2 ! Exercise is very important too, I have found yoga to be good as it helps with muscle tone and as the gym is out of bounds at the moment at least you can do this at home. Good luck with the MTX - but give it time

[Bruffingtons2 in reply to MilkMaid]

Thank-you for that advice about not taking M and folic on are day.Do you take Mex every week or every day?

Where are you based and what hospitals do you attend MilkMaid

if you don't mind me asking!

I am based near Cambridge and under Addenbrookes and The Royal Free.

Bruffingtons2

[Nnms]

Hi, first of all, congrats in taking the first dose of Covid 19 vaccine an no side effects. please which vaccine did you take? Also how are your blood works/ Are your WBC, RBC, lymphocytes, monocytes, neutrophils always within the normal range?

To answer your question, I have been on Methotrexate since Sept 2019, staring from 7.5mg weekly and gradually increased it to 20mg since Oct 2020. I have some hard lesions on my chest which is painful, itchy and red. It has not improved remarkably, but could say that it is not getting worse.

Usually, I have not had any bad side effects from the drug, and I have been taking it with Hydroxychloroquine 200mg daily. I was advised to take the drug with food, so I always do and I have not had diarrhoea, or vomiting. I also take Folic acid 5mg on Mondays weekly whilst I take the Methotrexate on Fridays. Advised not to take it the same day.

There was talks about changing my drugs to Mycophenalate, but my doctor thought I should stick with the Methotrexate that my body is tolerating. Really I am not sure whether these drugs are actually helping at all. But worried that if I stop, things may go haywire.

Please let me know what your blood readings are like.

[Bruffingtons2 in reply to Nnms]

Hello Nmms.

Thank-you for your reply.

I had the Psizer vaccine.

I have been on Mycophenalate since October 2020 slowly building up (titrating) from 1 / 1.1/

2.1/ 2.2.

Also been on Hydroxychloroquine (1/2 on alternate days) since September and tolerate that well.

I have always had low neutrophils and lowish WBC. They have both got lower and they have lowered the dose, then upped it again and got to the point where my platelets have dropped (never before) so taken me off Myco. this week and having an other blood test today.

I think they plan to start the Methotrexate next week after these latest blood tests.

(Example WBC-2.1 Platelets- 76 Neutrophils- 1.10 Lymphocytes - 0.75. I have always had low neutrophils even before this condition.

Also take folic acid very day.

I felt ok on the Myco. apart from these blood results but feel OK. and like you tolerated well.

Have early stages of S.S. apparently with hardened lower arms and legs, joints and hands, fingers very swollen and puffed. Working hard on fingers to keep them straight as beginning to curve. Back of hands red and white and writs very painful and swollen.

Like you only the other way round) I am fearful of taking Mexotrexate (as new to me) as have read some negative posts about side effects.

We all appear to present with such varied symptoms, don't we?

I wish you well with your decisions and understand about concerns ... I think all these meds take a time to work as well.

Good luck with your decision making and let me know how it goes Nmms!

Bruffingtons2

[Nnms in reply to Bruffingtons2]

Wow, it's so great to be able to discuss with a person and share ideas and experiences. Thank you so much. Will stay connected. And good luck too. However, let me mention that whilst your bloods are low, mine are high. Are you taking immune boosting foods as well? All those that they have been sharing in whatsapp? Like avocado pear, pineapples, garlic, tumeric, etc

[Bruffingtons2 in reply to Nnms]

Me again.I do not have a what's App link... so haven't seen that.

Would appreciate access to that please?

I am not on Facebook as looked at that and prefer this one.

I am lots of natural vitamins via a nutritionalist

Vit.D3 oil / Vit C powder/ GLA/ Vit E complex /iron/ folic acid/

Ginkgo, live pro-biotics made each week.

Also take a Beta Glucens Immune supplement containing VitA.Zinc.

/ selenium/ garlic/ Elderberry.

I include garlic in my diet.

Do you mean avocado pear or avocado, pears, pineapple or pineapple pear?!

Thanks for advice and would like a link if appropriate to Whats app group

please.

Let's keep in touch.

Thank-you!

Bruffingtons2

[Pjelly in reply to Bruffingtons2]

Hello. Most informative info on nutrition. Can you please keep in touch. My daughter has ssc/ ild and I am trying to find the best care for her. Thank u.

[Bruffingtons2 in reply to Bruffingtons2]

Hello Pjelly.I am sorry to hear about your daughter but glad she has you around!

I do not know what you mean by 'ild' I'm afraid.

The Royal Free Scleroderma Unit, Hampstead suggest some vitamin supplement on

their sheet handout. A lot of people recommend this unit.

It is so good to see they provide this addition to medication.

Thank-you Lou1936 for your comment on Mexotrexate. Given up Mycophenalate as assumed it was playing havoc with my blood readings and not on anything currently apart from Hydroxychloroquine.

Take care and keep warm everyone... The north Wind Doth blow!

Bruffingtons2

[Lou1936 in reply to Nnms]

Hello I have been on the Methotrexate for about 60 days with no apparent side effects. I was on Mycophenolate for almost 5 years with no improvement. Recently moved to Nevada from Indiana and my new Rheumatologist suggested the change. Hopefully will see some improvement in the calinosis before too much longer.

Thanks to all for sharing.

[Jensue]

I take MTX tablets each week & on the day I take those I don’t take folic acid, mine has been so much better since taking it which has been at least 10 years now. I also take Sildenafil (viagra) for my Raynauds which is so much better , at least I don’t get nasty blisters since taking it,I’d tried assorts before taking this & now I’m so much better fo it. It never goes but at least is now more under control.