Tips for starting mycophenolate

[Nw6London]

Hi all, I'm currently on hydroxychloroquine, transitioning to mycophenolate in a few weeks. (Diagnosed with diffuse systemic sclerosis.) Are there any precautions / tips you can share - especially in respect to sun exposure and any other common side effects?

[OldTed60]

Hi - I’ve been on maximum dose of mycophenolate for 3 years. Other than being more prone to serious infections (mainly cellulitis) I’ve had no issues with it at all. In terms of sun screen I use SPF 50 daily from April through to September. I’m not great at remembering to reapply as often as I should but I wear sun hats, scarves and thin shawls and generally take very good care with all exposed skin. I can’t recall the last time I burned so think I must do okay but I’m extremely fair skinned and prone to skin allergies. So I don’t have any extra advice for you based on my own experience. I get bloods monitored 3 monthly now and all is good. Best of luck - hope it helps you.

[trunchalobesity]

I carried on as usual but am careful in the sun. I put on Aldi moisturiser every day on my face with sod 30.

I had no issues with mycophenolate and have been on the maximum dose for more than ten years.

It’s a great drug. I’ve never had any infections but I’m careful about being around people who are I’ll, my friends let me know if they are unwell.

Best wishes

[Nw6London in reply to trunchalobesity]

Ah that's very thoughtful of them! I also use an spf on my face, but now considering all over and covering up.

Good to know re illness though. Also another fear as I have a little 1yr old in nursery and he brings home all the bugs. 😃

[Redwine53]

hi Nw6London I have been on mycophenolate now for nearly 4 years now, 2 gms a day, 1 gm morning and evening. I took one tablet a day at first increasing weekly to the 4 tablets. When I got to 2 a day I got a rash on my stomach but I persevered and it disappeared. I found that dairy products made me feel nauseous and so I have oat milk in my tea, I now seem to be able to tolerate milk if I have it a couple of hours after the morning mycophenolate.

Like others a blood test is needed for a renewal prescription (3 monthly) to check kidneys and liver as well as other things.

Yes I also have to be careful in the sun, I use factor 50 when I remember ( my face cream is factor 50 supposedly), you also need to be sun safe on hydroxychloquine, which I am taking too.

Mycophenolate is great for me, so hope all goes well for you.

[Nw6London in reply to Redwine53]

Goodness, I had no idea re sun and hydroxychloroquine...! I really suffered with the initial doses of hydroxychloroquine. I lost my appetite and lost a lot of weight. Down to 50kg from 62kg very rapidly. I'm just starting to gradually (very very slowly!) put some weight back on, but very conscious of going through that again.

[Redwine53 in reply to Nw6London]

so sorry to hear this, that sounds such a reaction. I got the impression from a rheumatologist that one of the symptoms of systemic scelerderma is weight loss. Four years ago I was 61kg and I am now 57kg. I must admit I am not as hungry as I was ( even on steroids, tho a low dose now).

Do you live in North London and attend the Royal Free? I am in North London and go to the Whittington.

[Nw6London in reply to Redwine53]

My weight was quite consistent until I started hydroxychloroquine. And it's a known side effect - lack of appetite, so I got that one. Yes, royal free is my local hospital, which is handy for all the tests. Under the care of Dr Denton and team.

[Juanburr1950]

I weighed 120 lbs when I first started Hydroxychloroquine and I’ve been on it 2 years now. I weigh 180lbs now. It has made me gain all this weight and my body is swollen every day. My doctor has me on fluid pills twice a day. I’m currently weaning off from it because of these awful side effects.

[Nw6London in reply to Juanburr1950]

I'm the opposite! I lost 12kg and I didn't have much to begin with. Roughly 9.5 stone / 62kg. Very scary and I look emaciated. Not a pleasant look and it's really hit my body confidence... but, there are worst things I suppose. Hang in there. 😊

[Juanburr1950 in reply to Nw6London]

I was at 117 lbs and have swelled up big at 180lbs. My organs are all swelled and very painful at this point. I’m completely off from Hydroxychloroquine at this point.

[Sclero_99 in reply to Juanburr1950]

I read that hydroxychloroquine wasn't always successful in treating scleroderma. I was prescribed it initially, but rejected it because of the side effects, partially those related to sight- I'm an illustrator and graphic designer. So I am curious re it's success rate. I was recently prescribed mycophenolate.

[Nw6London in reply to Sclero_99]

My understanding is that mycophenolate is the preferred drug to slow progression for early stage scleroderma. I couldn't go right only it bc it's not compatible with breastfeeding or pregnancy, so was advised by Dr Denton to wean ASAP to go onto it. Hopefully it's just management from here.

[Sclero_99 in reply to Nw6London]

Problem is, I'm hoping to finish renovations, which includes extensive time on ladders, drug information says mycophenolate can cause dizziness. We have cytomegalovirus in the family too, my niece was hospitalised for months when she was put on an immune suppressant & the virus activated. Cytomegalovirus can cause blindness, particularly in older people. Without access to a car I'm on public transport ... for hours at a time ... other passengers aren't going to advise me if they are sick, or have been exposed to something that could cause me harm. I'd pretty much have to give up living to take a drug that might extend my life, I have to ask, 'Am I taking the drug to live, or living to take the drug?'. At the moment my main complaints are extensive mucus & bent fingers, I can live with that. When I mentioned my concerns to my rheumatologist about cytomegalovirus she said, "Oh! You're afraid of an infection." and handed me the script.

[Lelly13]

I used mycophenolate for 5 months . At first it was fine just a lot of wind and bowel movement. But then they decided to up my dosage without continuous check ups because of covid it was only telephone consultations. But I got worse over the next 4 weeks and lost so much weight and body fluids that I ended up in hospital for 2 weeks. Everyone is different just make sure they keep an eye on you or you could end up with a stoma. Good luck.

[Nw6London in reply to Lelly13]

So much to consider. Sorry to hear about how this has affected you. Sounds like you had a really rough time during covid. I think most people got "lost" in the system during that time. Sigh... I hope you're back to your base line at least. I didn't do too well on the hydroxychloroquine, but hoping mycophenolate will be OK. Trying to maintain a positive (but prepared) mindset.

[Lelly13 in reply to Nw6London]

Wishing you all the best.

[AdrianaClaudia]

Factor 50 in the sun is mandatory, for longer exposure apply several times whem on mycophenolate

[SheenaC]

Hi

As well as having Systemic Sclerosis I also have Raynauds and Rheumatoid Arthritis. I was prescribed Hydroxychlroquine and Sulphasalazine to help the arthritis and was on it for years with no problems. My consultant told me I no longer needed to take Hydroxy... just a few weeks ago - presumably because it isn't having any effect on the arthritis.

I have lost a lot of weight over the last year and a half but I think that is due to my Scleroderma progressing. The skin the on my hands is tightening which makes them quite painful because of the arthritis. I am 86 and have had Scleroderma for 25 years. I don't have much appetite either. But hey ho I still carry on!