Hi. I'm new here. I need some advice. : I'm 35 yrs... - LUPUS UK

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Hi. I'm new here. I need some advice.

Mmafox profile image
Mmafox

I'm 35 yrs old and was diagnosed with SLE 2014. I mostly have joint swelling and pain. Of late I haven't been able to function without steroids on top of the Hydroxychloroquine.

My rheumatologist wants to put me on methotrexate but I'm a bit scared coz I hear it's quite a strong drug.

Im hoping to hear from someone on the treatment to maybe help allay my fears.

15 Replies

Hi Mmafox,

I was put on methotreate around your age (am now 41) they always start at a low dose and slowly build up it can take time for it to start working .

They usaully start you on tablets. Also a few folic acid 5mg ( so a 5mg daily) a few times a week which helps with any side affects.

I unfortunatly found the tablets hard on the stomach but my friend is fine on tablets.

So I then went onto a weekly injection, I gave myself at home with a speacial pen which is wide and easy for someone with arthritis to hold . I was also put on folic acid 5mg every day apart from day of injection for nausea, as it can lower your folic acid in some people ( which can Give you a bit nausea) so they just up your dosage apart from day of drug ( or it can interfere with methotrexate working as its getting into your system)

Everyone is different on the drug , I found methotreaxte definitely helped for me, as I was having a steriod injection into joints , bottom or iv steriods 6-8weekly for a long time ( my other friends would be 1 or 2 a year) and the steriods unfortunatly would only work for a couple of weeks . I have now had no steriods for a year but due to my lupus going on a massive flare again last few mths and attacking my joints harder , I have now started a 4weekly biological infusion's at hospital. Which seems to definatly be helping the smaller joints more as sometimes you need a combination of drugs.

So my advice is try It , it takes a good 8weeks at least to start working but its worth it once it starts to help . If your having lots of steriods then you must be suffering you poor thing. So give anything they offer a try, they wouldnt offer a stronger drug unless they thought you needed to try it.

Like I said they start at a low dose and keep very close eye on you , 2 weekly bloods for a month then if all good you go to a 4weekly blood test. So your always closely monitored and they up the dose according to how your doing.

If you do start to get nausea tell them and they up the dosage of folic acid if that doesnt work the weekly injection helps as it doesnt hit the stomach but I know lots of people perfectly fine on the tablets. Anyway im rambling if you need anymore advice please ask I know these strong drugs can be scary at first but if it helps it can change your life pain wise, if it doesnt they can try a different drug.

Good luck x

Mellisa

Mmafox profile image
Mmafox in reply to Mellisa1066

Thanks Mellisa I will give it a try. Will call the dr tomorrow.

I have been on Methotrexate for several years & it has definitely worked for me. I still get quite a lot of pain but it's bearable, not debilitating. My GP keeps talking about taking a break from it & I dread the day that happens. Obviously it doesn't work for everybody but I would definitely recommend giving it a try. Good luck.

I had same issue. Started on low dose of prednisone and mix. Doing much better now

Hello. I was diagnosed with SCLE in November 2013 and started hydroxychloroquine 2 x 200mg a day. However by May 2016 my Dermy realised that my hydroxy was not adequately controlling my symptoms and I was sinking fast. I had two courses of steroids each 5 weeks starting on 20mg for 2 weeks and then 3 weeks tapering. I felt so good on the steroids! And apparently this showed my lingering symptoms were autoimmune as the steroids had such a positive effect. But I was told I couldn't stay on 20mg a day forever. So, I was offered two different DMARDs are they called? Disease modifying drugs. Also known as steroid sparing drugs. I took the info on both away and had a few weeks to consider my options. I started Mycophenolate Mofetil in July. I'm on 3g a day, the max dosage. I started on weekly bloods but am now monthly. So, now 7 months on I think the Mycophenolate is finally working it's magic. Luckily I'm tolerating it well too. I know Mycophenolate isn't as strong as methotrexate but it's a similar drug. A complete immune suppressant. I was scared at the prospect of taking such a drug but to be honest I was so ill last year with my lupus symptoms that I was more relieved that this drug was offered to me. I also understand that if the lupus is not controlled that it can attack internal organs and cause irreversible damage. But make sure if you have any queries you discuss them with your doctor or Rheumy / lupus nurse. Do you have a supportive GP? Good luck and keep us posted on your progress.

Mmafox profile image
Mmafox in reply to Wendy39

I moved to a new area this past July so everyone is new to me from the GP to the rheumatologist. They are trying their best though but different Drs have different ways of doing things. My old dr put me on 20mg of prednisolone until my symptoms settled like after about a month then he weaned me off reducing every month till I stopped. My new dr put me on 20mg for 2 weeks and reduced by 5mg 2weekly as well and now because I flare up each time I reduce the dose he put me on 2.5mg and added mepacrine 50mg. He is insisting on methotrexate though coz the side effects are not as bad as the steroids. I'm in a lot of pain though so I think maybe I should give the methotrexate a go.

I want to look up the drugs you mentioned and have a word with him about them.

Thanks for the feedback

Wendy39 profile image
Wendy39 in reply to Mmafox

I should have added that I was offered the MMF, Mycophenolate Mofetil or Azathioprine as the my two immune suppressants drugs open to me. Yes, let us know how you get on.

Hi Mmafox. I was finally diagnosed in 1983 as having SLE when returned to the UK but it started in 1973. I on plaquenil, low dosage of steroids and Methotrexate and doing fine. I was unable to take tablet form and use pens to inject. Methotrexate has helped me enormously. I was unable to take a high dose but have found the right dosage after experimenting with level of dosage. Please do not be frightened but ask if you start on a low dose and increase to a level that helps you to stabilise. Good luck. x

Joy_1 profile image
Joy_1 in reply to Dessi72

Hi Dessi72

I was interested to read your post about the meds you take. I too am on HCQ (plaquenil), steroids and MTX which I take orally.

I just can't get off the steroids. May I ask what dose you take? I cannot drop below 5mg. Basically when I hit 5 I flare. I too cannot take a high dose of MTX and am thus far doing well on 15mg a week. What dose do you take when you say you cannot tolerate a high dose?

Hope you don't mind me asking these questions.

Joy

Dessi72 profile image
Dessi72 in reply to Joy_1

Hi Joy_1

I am on 10 mgs Methotrexate, (inject). Folic acid, Hydroxychloroquine 200mgs and 2.5mg Predisolone. This dosage of mess is over the last 10 years. Other years on high dosage of Prednisolone and Hydroxychloroquine plus other drugs. I am also taking Fultium-D3. It took a long time for my body to accept drugs but in time the SLE became stable enough for me to work (retired now), although I did struggle at times with pain etc. Now okay and still managing. Worst things at present are headaches and not sleeping and low energy. We need the warm weather to help us. Take care and sending hugs. X

Joy_1 profile image
Joy_1 in reply to Dessi72

Many thanks for getting back to me Dessi72. It's good to hear you are managing. I hope you get some relief form the headaches, lack of sleep and low energy soon.

Yes we certainly do need the warm weather. But hey it's not long to go till Spring and the days do feel like they are getting longer - yippee!

Mmafox profile image
Mmafox in reply to Dessi72

Thanks. I'm encouraged now coz you've been on it for quite a long time.

Hi Mmafox

I friend of mine who has RA has been on MTX for 22 years.

Granted her dose is low at 7.5mg a week but 22 years is a long time.

Hope that helps a bit.

Joy

Mmafox profile image
Mmafox in reply to Joy_1

It helps a lot. Thanks.

Hi mama fox

I'm not on methotrexate at the moment but took it a few years ago. It's a very good drug for the arthritis and doses used are much smaller for us !. It should help you avoid or reduce the steroids. Hope it works well for you. Keep us posted. X

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