I'm new here and I have a question: Hi, my name is... - PMRGCAuk

PMRGCAuk

13,906 members25,248 posts

I'm new here and I have a question

Francien profile image
Francien

Hi, my name is Francien, I'm 67, and I live in The Netherlands. Just discovered this helpful and wonderful forum.

I've been diagnosed with GCA/PMR in december 2017. Started on 60 mg Pred. Also on 15 mg MTX since februari. (Tried tapering Pred. to 10 mg but got a flare after a nasty norovirus, now back on 15 mg.)

Many side effects from both medicins. (Extremely tired, much sweating, weight gain, feeling like someone or something else has taken over my brain, moonface, fat neck, big tummy (I look like a pregnant bull), hairloss (aaargh!) etc.)

Now my Rheumy wants me on Leflunomide, 20 mg. She thinks it wil lessen the side effects. I have to take it together with the other medication for at least 6 weeks - then I can stop the MTX.

I'm rather afraid of yet another medicine. (Also have medication for thyroid, high blood pressure, cholesterol and of course for stomach. Will I be more sensitive for infections etc.?

Does anyone know more about this combination of drugs?

Greetings from The Netherlands!

18 Replies

Hallo Francien, sorry not to have an answer to your question, I have "only" pmr. Just to welcome you,me living also in the Netherlands. This forum brought me so many good things, advice, support, empathy a.o. and hope that works for you the same way.

To be honest Francien, you have done so wonderfully well, I would be inclined to carry on with a gentle taper. It is perfectly logical to increase your dose with a bad virus. I share your reluctance to add in another drug with its side effects etc. Anecdotes would suggest that they don’t help much at the lower levels. Others are grateful for finally managing to reduce their dose using a steroid sparer. I don’t feel that you are in a crisis with your reducing.

Please don’t be unkind to yourself about the physical changes you have endured. With any luck, we will be able to return gradually to normal in time. It isn’t as apparent to others as it is to ourselves. I know that you were making a self deprecating joke but each time we do that it chips away a bit of self esteem. You sound lovely. X

You sound lovely too SheffieldJane. And so comforting. And to the point. You're absolutely right that I'm not very kind to myself about the physical changes. I think I'm harsher on myself than anyone else is. (Although some people have made rather crude comments.)

Joking is a way to cope with those changes, but just as you said; each time it chips away a bit of self esteem.

And I think you're right about the tapering too.

Thank you for your kind and compassionate words. X

Hidden profile image
Hidden

Hi I am so sorry you have found yourself here... I to was diagnosed with GCA & PMR, in November 2017. I take only Prednisolone, but that is more than enough for me!!!!! Tapering has been a struggle, 40, 60, 55, 50, 50, 40, 80, 75, etc.. and then back down now to 30mg, but feel crap. And yes, I have extreme tiredness, weight gain, brain fog, moon face, fat neck/triple chin, pregnant bull look, facial hair and more... it all goes with GCA/PMR, Pred territory! I'll let the experts respond to your questions about meds as I am still a newbie and take only the Pred, so... best of luck to you! You're in the right place!

Francien profile image
Francien in reply to Hidden

Thank you so much for you kind words. We started at about the same time with this strange disease didn't we? I've read some of your rants. You've a great sense of humour and have made me smile, but also made me think twice about some things. There's much to be learned.

Yes, this is a good place to be. It gives me hope and courage!

Hidden profile image
Hidden in reply to Francien

Yes, we did indeed. Soooo, how was your Christmas? Mine sucked! Hahahahaha!

Thank you so very much fro reading my Rants... yes these two AI illnesses give me plenty to RANT about! As I am sure they do you too!!!!! Yes this is a good place and we must keep laughing and keep it light because if we don't we will surely CRY!

Yes, we must keep laughing, and ranting (is that a word?) but, dear Mamici, I think it is also ok to cry from time to time... helps to clean & clear the mind (is my experience). And after that on to the next rant!

Welcome to the club, Francien.

It sounds like your doctor is treating you for RA, not for PMR. They're two totally different conditions.

There have been "rumors" that MTX, when initiated very early in the disease course of PMR, can shorten the duration and lower the need for Pred, but there's not definitive proof of that yet. And there's even less research on Leflunomide and PMR.

I'd ask the doctor what they hope to accomplish, disease remission, symptom supression or Pred sparing. Depending on the answer, you can make a more informed decision about your treatment.

Francien profile image
Francien in reply to GOOD_GRIEF

Thank you for your reaction and wise advice, Good Grief.

I'm being treated for GCA in the first place. A few weeks later the docter decided I also had PMR (and not ‘just’ muscle pain) because all symptoms of pain in upper legs, neck and shoulders disappeared when I took the Pred.

I will indeed ask my rheumatologist what she hopes to accomplish with the Leflunomide. That will take a few weeks, because after she described the Leflunomide she went on a holiday for a month...

PMRpro profile image
PMRproAmbassador

Some doctors like using methotrexate (mtx). Others like using leflunomide. There is not a lot of proof for either.

I took methotrexate for 4 weeks - never again after the side effects! Why can you not stop taking the mtx when you start the leflunomide? You can stop it without tapering or anything. I would simply say no.

To get from 60mg to 15mg pred since last December is excellent - and I would refuse to try adding any more medication.

Francien profile image
Francien in reply to PMRpro

Dear PMRpro,

Tank you for your clear reaction.

The rheumatologist told me it takes about 6 weeks for the Leflunomide to work. So she said I had to take the MTX untill that time because maybe I would get a flare if I didn't. I got the MTX because my reaction to the pred was severe and she wanted to taper me (do I say that correctly?) as quick as possible.

And now I get the Leflunomide because I have a lot of side effects from the MTX.

Maybe you think I'm weak, but I find it so difficult to refuse something a docter advises me to do. My feeling says not to take the leflunomide, but she can be so persuasive that I feel guilty if I don't. She has learned for it and is an expert, isn't she? She wants the best for me, and I should trust her, should't I?

I think I will ask her again why she thinks the Leflunomide will be better for me. Not now, because she is on a holiday amd wil only be back in september.

PMRpro profile image
PMRproAmbassador in reply to Francien

" She has learned for it and is an expert, isn't she?"

You would hope she was but our experiences here on the forum on the whole do not support that impression! And no, I don't think you are weak - it is important to have trust in your doctor - but I believe it must be fully informed trust.

A study was done in Southend by the leading voice in the UK in the GCA field where 21 out of 23 patients went into remission of their PMR on leflunomide. One patient dropped out because of the side effects, one was lost to follow-up or didn't respond, I don't know which. I have a friend who is very involved with the PMRGCA charity in Scotland. She was on methotrexate for a few years and while she did seem to manage on a lower dose she couldn't get below about 7mg. She was switched to leflunomide last year and says she felt it "kick in" one day and she felt totally different, well for the first time for years. In 8 months she was off pred altogether and is now working on getting of the leflunomide.

They are probably worth trying - but not if they cause bad side effects. I think it may depend which side effects you have - I wonder if you have specific ones with mtx those are more likely with leflunomide? Some are very common with leflunimide and you must be monitored closely I think.

Francien profile image
Francien in reply to PMRpro

Thanks so much for all this information. It's very helpful.

Wouldn't it be wonderful if the Leflunomide would help me as much as it has helped your friend in Scotland...

From the beginning I had an extreme reaction on the pred. My rheumatologist said I had very sensitive receptors for pred and that's why she started with the MTX - to taper the pred as soon as possible. I had a few misarable months with both drugs, but was able to taper to15mg. Then 12,5 and then 10. But then I had this norovirus, couldn't ake any medicine for a few days (which wasn't a problem, said my GP) and next I got a flare.

I raised the pred to 12,5 and the rheumatologist was ok with that.

But I still had the dreaded headache and pain while chewing and so on. So I raised the pred to 15. That felt a lot better. But the hospital said no, 12,5 is better because your blood is ok, and you have tot start with the Leflunomide now. (Different rheumatologist because mine was/is on a holiday.)

Since a few days I take 13,75 mg (I only have 5 mg tablets which I cut in four.) I didn't start the Leflunomide.

I don't really know why I have to switch to the leflutomide and I will ask my rheumatologist the reason why when she is back. I think that the side effects I have are pretty severe in her opinion. These are; extreme tiredness, muscle weakness, shortness of breath, copious sweating, Moon face/neck/belly, weight gain, extreem hairloss. And last but not least; moodswings and depression.

She has send me to a medical psychologist. She says that these diseases are a life event and that it's good to learn to cope with them with the help of a professional.

I have had some talks with the psychologist and that's encouraging , but I must say that this forum helps me even more.

So thank you again for your commitment, empathy and wise words!

Toenti profile image
Toenti in reply to Francien

Hi Francien, I also live in the Netherlands,where they only give you 5mg. Tablets. If you ask also for the liquid prednisolon, then it is much easier to slowly decrease your dose by combining the tabs and the liquid. I hope this helps.

Welcome to this site. It is such a wealth of information to us all PMR and GCA suffers. Also some comments are laughable funny too. You are in good hands here. Janette xx

Francien profile image
Francien in reply to morrison

Thanks Janette! It feels wonderful to read so many recognizable reactions, especially because most healthy people don't understand these diseases at all. (Although some of them really try, but it's still different.) Besides that, everybody is so nice and helpful on this site, it really is like a warm bath!

XX

Hi Francien

I thought I'd like to comment albeit a week later due to hols. You have done extremely well and you have a good Rheumie I think. Having said that you should question anything she recommends if you are not sure. All your symptoms are typical and with the help of the steroid sparer you have reduced much more quickly than those that don't - as you get lower on your steroids these will start to recede, promise. You are well on the right course and I would keep with what your Rheumie recommends, but again always ask what you need to know. Mtx can be stopped straight away but I also understand why she wants to keep you 'topped' up via the overlap, but if you're having side effects on the mtx then why continue, which is the worst? That is a discussion in September I understand. Have you started the Leflunomide yet? Although we all have these illnesses we are very individual in how the treatments work - the information gleaned here can be very helpful in knowing you are not alone. Wishing you all the best, you are in the right place here for advice.

Hi Telian,

Thank you for your comment, I appreciate that very much.

No, I haven't started the Leflunomide yet. I'm very uncertain about it. I have made a list with questions for my rheumie. Hopefully she will anwer them when she is back from her holiday.

I am so glad I have discovered this wonderful forum with all its fellow-sufferers who are so nice and helpful to eachother!

All the best,

Francien

You may also like...