I'm so disappointed

I've been on Leflunomide for16 days and I've been feeling really well.A couple of days ago I reduced my pred to 6 mgs ( I have been on 7 mgs for about 8 weeks ) and I have just heard that my fortnightly blood test showed my PMR is back up to 15. Does PMR ever go away ? I've had over 4 years of it now and whenever I feel as if things are improving something goes wrong. It is very hard to stay positive:)

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  • My CRP and ESR were never under control with Leflunomide as I'm unable to take any first line drugs for RA or Steroid I was put onto a Biologic 18 months ago and they are now CRP4 ESR 5.4 com paired with 11 and 14 for awhile I felt good on just the tablets then they weren't working well enough as I could take 29mg every day.

    Regards Sandie

  • Thanks so much Sandie - what a cute cat. I am sorry but I don't know what you mean by a Biologic ? I was very interested to read your comments on Leflunomide - my rheumie is leaving things as they are for another couple of weeks so goodness knows what will be her next plan of attack! Take care Sally😊

  • Have you got polymyalgia or RA if suggest you look at NRAS uk or Arthritis Research both will help a great deal with the understanding of drugs and treatment it all scary stuff with these illnesses but if you need more help or just need to talk message me. Where do you live.

    Take care Sandie 😊

  • Hi again- you are so kind😊I live in New Zealand so unfortunately won't be able to talk. I have been on google looking up biologics so have a bit of an understanding now. I will have a look at the ones you suggested in the morning.Im getting tired so I'm off to bed now.Also I've got PMR and RA.Cheers for now Sally😊

  • Nite nite Sally always here if you want to message.

    Take Care

    Sandie 😊

  • Thx Sandie😊

  • Hi zebsky - you don't happen to live in Auckland do you?

  • Hi yes I do live in Auckland😊

  • I am on North Shore. Email wmlthompson@hotmail.com if u feel like making contact sometime.

    I have had GCA and Polymyalgia for 2 years. Lost some sight in one eye. I don't know anyone else with this illness

  • Hi, I am having problems with the system and will reply later. Sally

  • My ESR has been in the 50s for at least a year. None of the doctors seem particularly worried. My CRP has always been high too, currently around 10. I only worry if I am not feeling too good, otherwise I just ignore the results. My GP and rheumatologist do not seem to take much notice of the results either.

  • Hi piglette I agree with what you are saying - I have been feeling really great since I started the Leflunomide. My GP seems to want to have my Rheumie overseeing things if my CRP goes up.Ive settled myself down now and I will enjoy the good days I'm currently having.

  • My GP seems a bit frightened of PMR or she may just be frightened of me! She is always saying I should see a rheumatologist rather than her. I saw a new rheumie in September who said I should see her again in four months, but it was probably a waste of time! Perhaps I have the same effect on her as my GP.

  • I found my first GP knew very little about PMR but my new one is more clued up thank goodness Also my Rheumatologist is a Professor so I guess I'm lucky to be seeing her.I also am gaining more knowledge from reading the posts on this site.

  • Hi Junerose, I understood that it can take about 6 weeks for the leflunomide to make any affect so you might have reduced your pred a bit too quickly? I was put on leflunomide but did not get on well with it as I got severe stomach cramps. I've also tried azathriaprine, made me very ill, methotrexate which did nothing. I'm now on hydroxchloroquine and a really strange pred dose of 20mg one day and 8mg the next and reducing the smaller dose by 1mg every 2-4 weeks. Prior to this I could not get below 12mg a day and I started 3 years ago on 15mg day. I have no idea what my esr or crp are as no longer having regular blood tests! Anywho maybe a call to your rheumy or pharmacist to ask about the time required for leflunomide to kick might be worthwhile?

  • I was replying to question don't take pre made me totally mad.

  • Sorry don't understand your reply???

  • You addressed your reply post to JuneRose - and it is Zebsky you meant it for I think.

  • Ah pred brain strikes again 😜

  • At least we have something to blame! ;-)

  • Hi Griggser - according to my rheumatologist Leflunomide takes 6 to 8 weeks before you notice any improvement and up to 26 weeks for the full effect to kick in.

  • Just to say I was replying to another lady to her question. I've been in leflunomide 4years and no problems took 4 weeks to work last year a Biologic was added in as my inflammation levels were never settled. Hope this explains.

    😊

  • Hi Zebsky.

    7mg seems to be the tricky dose when you cross your fingers and everything else and hope your own immune system wakes up and starts to behave. If it doesn't work at least you know you can be made pain free.

    Is it your blood results that are causing you to be disappointed. If it is but you feel ok it might be that your body is adjusting to the lower dose. This is why so many on this forum the taking alternate old/new dose for the transition.

    It can be very wearing when you think you are getting there then it bites again. You will find lots of support on this forum.

    Regards

  • Thanks granny-b. Yes I was upset that I was feeling so well and yet my inflammation levels were going up. I realise now that the new drug won't kick in properly for quite a while.Im going to enjoy this current wellness and the support on this forum is wonderful Kind regards 😊

  • In one sense PMR doesn't ever go away: it is the symptoms of an underlying autoimmune disorder, the immune system isn't working properly and attacks the tissues in your body in error, causing inflammation. That activity may die away enough for there to be no inflammation being caused and you are said to be in remission but the potential is there for it to wake up again and you have a relapse.

    The reality is that for about a quarter of patients it burns out and they are able to stop taking pred in up to 2 years. For a further half of patients it takes something like up to 4 to 6 years to be able to stop taking pred and for the rest of us it can take even longer, some people may be on pred for life but for some that may be due to adrenal insufficiency.

    I have had PMR for over 12 years now, I have been on pred for over 7 years. To my knowledge it has never died down - the lowest dose of pred I have managed is 4mg, 3.5mg was a step too far, the fatigue was awful so I went back to 5mg where I felt really well. However, in that 12 years I have had 3 big flares, one was the one that eventually resulted in a diagnosis and the other two just happened and I had to go back to the starting dose of 15mg. The last time was in February and I am now (safely I hope) back down to 9mg.

    I gave up expecting to get off pred some considerable time ago - as long as I take the right dose I feel well and can function, having a pretty much normal lifestyle for someone in their mid-60s. I've given up skiing - but for other reasons really. I travel and generally enjoy myself.

    That acceptance, taking things as they come does avoid a lot of heartache. I have pills, I take them, I'm fine. I also have atrial fibrillation, caused by the autoimmune part of PMR, also incurable, that means I need medication. That's fine - I take that too. Don't think I haven't had problems with pred - I had massive weight gain, crazy hair and skin with one sort but a change of type of steroid sorted that out and I worked hard and lost all the pred-related weight. But on the whole, life is better with pred than the 5 years I had with PMR without it.

    When I do feel sorry for myself, I wander over to the VasculitisUK or LupusUK forums and remind myself how much worse autoimmune disorders there are and that teenagers are faced with potentially life-threatening things. If you have to have an autoimmune disorder then PMR isn't a bad one to choose. It rarely strikes before late middle age and it doesn't kill. It may be pretty uncomfortable but so is RA: RA never goes away and causes damage. PMR is more often than not manageable with the right dose of pred. It isn't all bad.

  • thank you pmrpro for the consolation in your words

  • Wise words PMRpro

  • Next time I get upset I will count to 10 and read your wonderful post again.Thank you so much PMRpro:)

  • Hi zebsky, hope you are ok, like some one else said I shouldn't worry to much about blood test levels, I expect it's the reduction in steroids, as long as you still feel better on Leflunomide that's the main thing, I have been on it about 14 weeks now feel marvellous have a blood test every month to check liver and kidney levels but not for my inflammation levels having that in 3 mths time just before I see him again, have to reduce steroids from 5 to 4mg next week so just hope I still feel good will let you know what happens, just try to persevere and hopefully by the time you reduce again your inflammation levels will come down, it may take you longer to get off steroids but as long as you are not in so much pain that's the best thing, hope all goes well for you. Val.

  • Hi Val - I'm fine now ...it's nearly 7am in the morning in NZ and I'm reading posts on my computer.I was VERY upset yesterday because like you I really am feeling great. It is a joy to get out of bed in the morning and to have no soreness.I was taking 8 paracetamol a day and I now need none.When the nurse told me my CRP was up to 15 my world crumbled how could I feel so good with my inflammation levels going up? I have also been told the Leflunomide can take up to 26 weeks for the full effect to kick in. Please let me know how your steroid reduction goes next week - wow you'll be down to 4 mgs😊Keep well my friend x

  • zebsky

    Please see my reply to podo. We seem to be in a similar position. When I started Leflunomide only 3 weeks ago I was on 12mg having tapered down from 15mg after an acute flare up in July. Since then I have successfully got down to 10mg but I don't think this can have anything to do with the Leflunomide in such a short space of time. I am going to try 9mg. from tomorrow. It may seem a bit too fast but a recent blood test showed my CPR had fallen to 7 which I was very pleased about, not to say very surprised because it was 56 after the July flare up.

  • Hi Robert - we do seem to have rather a lot of similar stuff going on. I managed to find your post to podo and I have read it.Im now day 18 on Leflunomide and I feel great and I still have no side effects.It takes up to 26 weeks for Leflunomide to fully kick in so that's something to look forward to ?. I'm pleased you are getting down to 9mgs tomorrow - hope your ok👍 I've got a nice Xmas dinner on Wednesday night and Im wondering how many drinks I can have? Take care Robert and keep in touch😊

  • Seems to depend on the doctor - some say none at all. Other sources say 4-8 units per week. Not all at once!

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