Feeling horrid !

[Sami13]

I'm on week four of methotrexate and the side effects have kicked in. I feel so sick I took it Monday and the nausea started Tuesday. I called the scaladerma nurse and they told me to increase my folic acid from just Thursdays to wed Thursday and Friday. Has anyone got any other tips ?

Thanks

[GillSuffolk]

Hello Sami,

I have just been stopped Methotrexate, I've had 2 months of injecting myself with awful side effects, the headaches & sickness started the 2nd day after injecting ,& lasted 2 days & nights, have had a terrible time, the nurse upped my folic acid up to 6 days a week , which sadly did not help. I saw my consultant Monday who said to stop it straight away & I am now awaiting a date to start chemo infusions as despite having the Methotrexate at a high dose of 20mg it has had no effect (apart from dreadful side effects) I am very apprehensive about the chemo IV. but, as it's such an aggresive , rampant type I've got I am getting desperate & very sad about how my life has been turned upside down. I know no two cases are the same & we are all struggling with this demon.

I wish you well & sending love & thoughts

Gill XX

[Sami13 in reply to GillSuffolk]

Hi Gill. Thanks for the reply. Do you have a final diagnosis? Are you under the Royal Free ? It's a horrible lonely condition and the drug side effects are just as bad.

Sam xx

[Hidden in reply to Sami13]

I had the same side effects with Methotrexate as you describe. After two years, trying everything from antiemetics to folic acid daily and switching to injections - I finally quit. Then, having had pancreatitis on Azathioprine, I'm now on Mycophenolate and have no side effects at all. I don't have Scleroderma but I do have primary Sjögren's which overlaps with RA and Raynauds. Mycophenolate is often used for Scleroderma, Lupus and Vasculitis and is generally better tolerated than Methotrexate. It might be worth asking about this if your nausea continues - it really is horrid I know.

[Sami13 in reply to Hidden]

Thank you mycopherclate sounds much better. I will definitely keep that in mind if things don't pick up soon. I really don't think doctors understand the impact side effects have when your already feeling ill.

[Lyndabickley]

I have had Mycophenalate for about 9 years. When I was initially diagnosed I had had such a rapid onset that gamma globulin was considered. I was admitted to the Royal Free but never needed the gamma globulin as they felt the mycophenalate was working. Although I was initially warned about potential reactions I may have, I never had any side effects. I no longer take it as my condition has stabilised. I hope you find a solution to your condition soon.

[tall-tim]

Hello Sami13.

This sounds like a nightmare for you. What dose Methotrexate are you on?

Tim

[Sami13 in reply to tall-tim]

Only on 12.5 but I'm 5 foot and about 8 stone I don't really do being ill very well !

[tall-tim in reply to Sami13]

I am on 15 mg per week, in pill form + Folic Acid. I haven't had any problems (yet) tolerating it. I am 6 ft 6" in height, but I wouldn't have thought that size makes much difference (could be wrong). Are you on pills?

T

[Sami13 in reply to tall-tim]

Hi Tim.

I'm on tablet form now but the nurse said I could consider the injections as they don't sit in your tummy. I guess I should keep going for a while and see if I get used to it. It's for 2 days usually following the day I take it. How long have you been taking it ?

Sam

[tall-tim in reply to Sami13]

Since August 2015.

Maybe my guts are already so wrecked it doesn't make any difference

Are you on Lansoprazole to help settle your stomach? I am

Also, have you had an endoscope to look down into your stomach (and a bit further)? Perhaps the lining is damaged.

T

[Sami13 in reply to tall-tim]

I'm not on anything for my stomach. I definitely think it's worth a try. So weird I feel fine today It's only 48 hours I feel rough for each time

[tall-tim in reply to Sami13]

Perhaps ask your consultant about the possibility of lansoprazole to mitigate impact on your digestion. They will at least have an informed view.

[MilkMaid]

I don't know what your methotrexate dose rate is but I take the methotrexate on one day of the week and folic acid for the other six days

[Sami13 in reply to MilkMaid]

I have just increased to 3 days of folic acid maybe I can increase Thanks

[MilkMaid in reply to Sami13]

I am on 15mg Methatroxate but apart from feeling tired for a day I don't really have any side effects, it took about 8 weeks before I noticed any change so try & give it time to work. I found that taking the meth in the evening after a GOOD size meal was best for me & same with the folic acid, try & avoid pills & empty stomach. Hope things pick up for you.

[Dunhorse123]

I had the same awful effects, I was feeling so sick I had to take it on Friday so I could be sick and unwell over the weekend to enable me to work full time in the week. Then I developed vertigo, and have had flare ups of it every few weeks. A horrible way to live your life, and that's without the disease progression of scleroderma too! I couldn't cope with the side effects, so back on plaquenil. Unfortunately the vertigo attacks are increasing in frequency, and I'm certain this was an effect of methotrexate. I admire you for sticking with it, and I hope things improve and it works for you.

[Sami13 in reply to Dunhorse123]

You poor thing. I don't think I could do vertigo on top of everything else. Hope things improve for you soon