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Fighting a flare - boost to 20mg for how long?

Posted , 7 users are following.

Rudivl
Rudivl

So, I think I have been fighting a cold and my blood test showed my CRP has gone from 12 to 18.  Experiencing growing inflammation PMR pain in shoulders and hips.  I am currently on 16mg since the summer.  3 years in - I got down to 5mg last November too quickly and flared horrendously.  I boosted to 11mg and then, as I said, increased again in the summer to try and find the right level to manage the pain.  I have been waiting to be more 'pain free' before starting the DSNS method but not there yet!  So, after reading a lot on here, I decided (with the agreement of my rheumy!) to fire 20mg at it.  Now 2 days in and feeling much relief.  What is the consensus? Do I go straight back down to 16mg after the 2 days and hope that it has dealt with the inflammation?  My rheumy does not want me to stay on 20mg.  I have just received a diagnosis of osteoporosis which is particularly bad in my lower spine - feeling quite sad about that (I'm only 51!)  Especially as I had stopped taking Risedronate as my calcium levels were low and Vit D was through the floor.  It's difficult making the right call about all these meds, isn't it?!  My rheumy wants me to take Methotrexate because of my bone density results.  I am still very unsure......?  Thoughts, lovely people? RD

1 like, 12 replies

12 Replies

  • EileenH
    EileenH Rudivl

    Posted

    " My rheumy wants me to take Methotrexate because of my bone density results"

    I have to say - I would want a LOT of justification for that. I assume he thinks it will reduce the pred dose but there is no evidence it will work, it does for some, not for others. If he is REALLY concerned is Actemra in the frame?

    Um - calcium and vit D levels are to be checked before starting to use bisphosphonates and then checked regularly. If your levels are low they need to be rectified before starting them. The calcium is low because the risendronate is doing its job. Does your rheumy really know what he is doing with it? 

    Personally I'd say you might need more than just 2 days but if it is just a flare you can try going back to 16mg. i think 5 days might be better.

    • Rudivl
      Rudivl EileenH

      Posted

      Hi Eileen - just to clarify, I can go from 16mg to 20mg for 5 days and then back to 16mg?  Rather than having to taper DSNS from 20mg?  

      My bloods are checked regularly for Vit D and calcium levels and when these were both very low earlier in the year, I decided to stop the risedronate.  Also, because it seemed to get such bad press on here!  I'm now wondering if that was the wise thing to do? I am now taking 60,000 units of Vit D once a week and my levels are up to 79 from 22 and calcium is 2.28.  However my CRP has increased from 12 to 18.....  

      My rheumy has offered me Azathioprine (Imuran) instead of Methotrexate - he's pretty determined that I take a DMARD to help reduce the Pred.  In my last appointment he said it would 'kill me'!! Not alarming in any way then!!  I know about the recent Maya clinic research but I always feel we are pitched against each other and I am trying to find a way forward without disrespecting him (i.e my googling can not take the place of his many years of experience and medical qualification!).  

      I do feel sad about the osteoporosis diagnosis and feel like I'm on a losing battle with these meds!  I'm still waiting for a result from a CT scan to see if anything else is rearing its ugly head again.... but that's another story and one you know all about, Eileen!  

      Thanks for listening to me vent! RD 

    • EileenH
      EileenH Rudivl

      Posted

      Yes - you don't need to taper after a short increase. The only problem would be if the activity of the underlying autoimmune disorder had increased - becuse then you might need more daily pred. 

      And yes - I have come across other rheumies who take the "pred will kill you" line. It simply isn't true in this sort of case and it is very unprofessional of a doctor to say things like that. I'd be looking for another - because although he may have a lot of training and experience he is trying to scare you into doing what HE wants - and another doctor might not agree.

      Your calcium is now OK because you aren't taking the risendronate and the calcium is being released from the bones to keep the blood level up and that is what causes osteoporosis. However - some bisphosphonates are used in BC to direct the calcium into the bones and not into tissue. I think it is perhaps something to discuss with your oncologist - I assume you are still under someone? 

      I know WHY he is so determined to put you on a DMARD - but there is no guarantee it will work, so what's he going to do when it doesn't? Have you seen a specialist for the osteoporosis? The DMARD may not be as bad as you think - lots of people do take them and have no problems. If they make you ill then you can stop without any problem. 

      Where are you?

       

    • Rudivl
      Rudivl EileenH

      Posted

      Thanks so much, Eileen. I’m near Southampton, UK.  Our surgery  has just closed so I will discuss a possible change when I see my new doc.  I’m thinking that I will begin the risedronate again now my levels are better as I had no side effects.  Well, none that I can see! Jury is still out on the other drugs. I’m taking tamoxifen too and wondering what side effects this is adding to the mix?! Happy days! R
    • EileenH
      EileenH Rudivl

      Posted

      Southampton hospital has (or at least had) a very good department dealing with osteoporosis so maybe getting your oncologist and them together might be a good move. At least TRYING methotrexate would satisfy your rheumy in the meantime. I do understand your reluctance though.
  • Anonymous111
    Anonymous111 Rudivl

    Posted

    Did you have osteoporosis before the steroids or is it solely because of the steroids?

    Are you on calciuma and Vit D?

    Make sure you get some gentle exercise and spend sometime outdoors everyday. This will help up your vitamin D and exercise should help strengthen your bones.

    • Rudivl
      Rudivl Anonymous111

      Posted

      Hi Ben - Thank you for your response.  No, I didn't have Osteoporosis before steroids.  2 years ago I had the Dexa bone scan and they said I was osteopenic then.  It was quite a shock that I had moved so far into the osteoporosis range. 

      As per my reply to Eileen - yes, I am now on 60,000 units of Vit D but I hadn't been taking calcium regularly as my oncologist (breast cancer 3 years ago) was not keen on me doing that.  My rheumy and he don't agree on calcium supplements!  And I am caught in the middle! 

      I have spent the summer outside pretty much daily and my vitamin D is the lowest it's ever been so something else is going on, I think.  I try to walk regularly but it's sometimes a battle with the 'needing to pace' and keeping exercising.  Hey ho!  I try to keep smiling ;0)) 

    • Rimmy
      Rimmy Rudivl

      Posted

      Hello Rudivl

      I do feel for you as you are obviously between a rock and a hard place with some of these decisions and I hope you manage to find the right balance between all these competing factors. You raise however several important issues for many of us - the relationship between us and our medicos being a major one when they (unfortunately) 'often' don't seem as informed as we would like or expect. The problem of keeping up a reasonable level of exercise and still 'pacing' being another which I struggle with. How much medication and/or supplements and what our bodies individually do with them another big deal for many of us as well !!

      I wish I had some specific helpful ideas to offer but I think the most important thing is your nuanced level of awareness of all these factors which along with support from Eileen and the serious 'experts' on this forum - will produce in the end the best possible outcome.for you  It is those of us who don't have enough of a 'handle' on these sometimes complicated matters who is likely to do the worst I think. 

      All the best

      Rmmy

       

    • EileenH
      EileenH Anonymous111

      Posted

      If being in the sun guaranteed a good vit D level then neither I nor my husband would ever have had a problem. We did.

      As you age the mechanism in the skin that creates vit D slows down so that by your mid-late 60s it is only one quarter as efficient as it was at 20. Many 20 year olds are deficient!   In the northern hemisphere the mechanism only works between 11am and 3pm from May to September unless you live south of Turin in Europe and Portland in the USA. And if you have darker than a slight suntan - the efficiency is reduced even further.

      Even doctors fall into the trap of believing all you need is more sun - if you have low vit D then it is probably something else.

    • Rudivl
      Rudivl Rimmy

      Posted

      Rimmy, thank you for your condisered response. Sometimes there is no advice but a listening, empathetic ear is what is needed for us to be able to keep going and not get too low or consumed with our pain.  I so appreciate having this forum. I hope you are well. RD
    • Anonymous111
      Anonymous111 Rudivl

      Posted

      Which parts of your body did you have the DEXA scan done on?

      Did the oncologist explain why they didn’t want you to take supplemental calcium? Were you ever hypercalcaemic?

    • Rudivl
      Rudivl Anonymous111

      Posted

      Hi Ben - lots of questions! I think they scan the lower spine and one hip as this indicates bone density throughout the body.  Breast cancer is calcification in the breast so I'm guessing that's the reason to avoid supplements - plus I've read some interesting research on calcium and the bad science around it. Calcium in the veins is linked with heart attack and stroke.....?  Many thanks for your interest.  RD 

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