Flare or relapse at 10

I posted on diabetes and do not know if you will get this Pro so I will do it again reduced to 10 on September 24. My ESR on October 17 was 23 and on October 26 was 31. I know have a headache which I had before but did not recognize it as GCA headache. It is different. I recognize the other symptoms now with my body.Should I go back to 12.5 or higher. I was fine at 12.5 which I stayed on for a month. Then I alternated 12.5 and 10 for 10 days and finally went to 10 on September 24. If you recall I am the person scheduled for eye surgery November 30. That will not happen because I have to be at 10 for surgery. It is however more important to clear the inflammation in my arteries. What a shame things were going so well and I was doing this the slow correct way. Would appreciate your opinion. Thank you. Marilyn

17 Replies

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  • Hi Marilyn,

    Sorry to hear about your setback. If you were okay at 12.5mg then you may be alright back at that dose again. Just try and see, you obviously don't want to increase more than necessary. If it doesn't work then you may have to consider a bit higher.

    As you're trying to reduce from 12.5mg to 10mg does than mean you don't have 1mg tablets? I think PMRpro said in a previous post about the 'not more than 10% reduction' . Well you're trying to reduce 20% - that may be too much for you.

    If you can't get get 1mg tablets, then try a slower reduction -

    1st week - 1 day at new dose,

    2nd week - 2 days new dose (not consecutive)

    3rd week - 3 days new dose,

    Increase days on new dose until you reach your goal. That way you you can pick up any problem, and stop or repeat previous week if necessary.

    As you say, shame about your operation, but you need to be right first, good luck.

  • I thought that the 2 1/2 mg would be OK until 10 and then I would go to the 10% but I see that it's not so. Will try your suggestion hope to hear from pro@ soon. Thanks for quick response.

  • This really is something to discuss with your doctors - but if you are getting increased symptoms you must go back up I'm afraid. And the ESR shows there is increasing inflammation.

    If 12.5mg manages the inflammation might the surgeon not consider making an exception? I wonder if having a depot injection might let you get the oral dose down for surgery - or would the surgeon fell that was still too much pred?

  • I have to play this by ear today is an entirely different day my headache is gone but my ears are still ringing again not badly. I might just wait for another blood test. How weird is this last week calcium 8.1 never low before naturally albunim low too as well as potassium. This week everything normal. Did increase potassium by taking two 99 mg tabs. It is strange calcium was nine before then 8.1 then 9 yesterday. Perhaps in seven days or so my sedimentation rate will come down. I think I might want to wait and see how I feel. Eye dr. might do surgery at 12.5. He is a big deal at Bascom Palmer not easy to get to. Rheumatologist didn't think I needed a shot At 10. Let's see what tomorrow brings perhaps I'll get lucky and said rate will stay at 31 or go down. CRP didn't move its normal. But as you always say symptoms Trump blood. Thanks for your response will talk soon. Big picture the picture but now I want to see the write up OK right here with that with the process to me By the what is deposit?

  • You mean "depot"? It is a form of steroid injection that is slow release and works over a few weeks. It is possible to manage PMR with it and I know someone who had GCA symptoms that her injections were raised to cover.

  • Never heard of the drug being used in the US but I can certainly ask. By the way TCZ was approved here last week by the FDA and if I have to go up in the prednisones higher than 12.5 I might consider it if I don't have to pay for it.

  • Was it approved - or given "breakthrough status"? Not quite the same.

  • Last time I posted ESR was 25, and CRP was0.34.That was on 2/21. I reduced from 11 to 10 (my mistake) but did it slow way. New Bloods yesterday ESR 27 and don't understand CRP because it was done with a different method was 9.8.and the norm is 0.0-4.9 . And the other way it was 9.35 and the norm is0.00-3.00. It also had my B12 at 2,000 which is off the charts. I took another ESR and CRP today at the hospital that always does it. How could it jump like that. I do know the stress is horrendous. With the move of half my house moving and a complete renovation in NJ without me there is nuts. Funny.... the paint I picked out here was a lemon yellow, on the walls it was a bright yellow/orange. So now on 10 do I go to 11.. At 11 my CRP was 0.34 and the ESR was high for me at 25. I usually run 17ish. but was down to 1 just 2 months ago. By the way it was breakthrough status on the actemra. Or go to 11.5 just to get the numbers down. My blood does reflect how I feel and I feel lousy. The last time I felt good was at 11. Can't ask Rheumy he would say go to 40 for a week, or eh 27 is not high. I never know what to expect. Can't wait to get to NJ have app. with head of Rheum. at University of PA. If the CRP at 9.8 is true, then it is really high for me. Do you think stress can do this?And should I perhaps go to 11.5 for a week or so. I'm also buying furniture that may not fit in the new place. Actually I did cancel a bedroom set because I had the wrong measurements. what do you think? I know I'm nuts, what else do you think. My body hurts and I have bad tension headache all the time with tinnitus all the time. Thank you. I appreciate whatever you have to say.

  • Of course stress can do this - stress and PMR make bad bedfellows and a flare is likely. You really are your own worst enemy!

    Are you sure it is a tension headache? Headache and tinnitus are GCA symptoms. Your CRP is high by both measures - you need it checked again soon to see if it is continuing to rise. And you really do need to calm down!

  • I do have GCA which was diagnosed almost 2 years ago. It's been very rough these last few weeks. I guess I should be taking something to help that tension but things didn't get bad until this last test. Two weeks ago my CRP was 0.34. But if you recall the ESR had gone up to 25. Which I didn't understand because the CRP was so low. I will do my best to take care of the tension. What do I do in terms of the prednisones? Should I be going up to a higher number of prednisone for a week. I was just thinking 11 where I felt good. My scalp does not hurt the temple area does not hurt. The tinnitus has been around forever. it's just worse. no Jaw issues no dry cough. Had all the symptoms in the beginning. Can inflammation be from my diverticulosis and twisted colon. Been having pain. No fever. Does it necessarily mean it's GCA when the CRP is that high. My only symptoms are the tinnitus and neck and headache. I'm not making light of this. I just don't know where to go with the prednisone I have no guidance from the doctors here. Thank you Pro.

  • Not necessarily no - CRP and ESR are only signs there is inflammation somewhere so it could be the diverticulitis, though I don't know.

    If tramadol is helping the pain you probably don't need to worry too much - it doesn't usually do anything for PMR and GCA.

    If it were me I'd try a bit more pred and see if it helps. If it doesn't after a few days you can always drop back to the current dose again.

    My cholesterol is fairly high though I do have a very high HDL - but NOTHING would persuade me to take statins! And I have a label on my notes about ACE inhibitors too...

    You'll be fine xxxx

  • Forgot to mention headache lets up and so does tinnitus with 1mg of tramadol. Just took 1/2 mg of klonapin and do take 1 mg at night. Just added the day dose. Just hearing from you calms me down. Doctor saw these numbers and didn't say a word. A1c went up from 5.9 which I had been keeping control with diet was 6.1. Cholesterol was off the charts too. Cannot take cholesterol meds , ace inhibitors or nsaids. That goodness I can take prednisone with its awful side effects.

  • My total cholesterol 265.hdl 115. It would be a cold day in hell before I took a statin. It's always been below 218. I also think the a1c was affected by this jump because that's diet controlled at 5,9 and went to 6.1 . Everything else went up so why not the a1c.

    I'll go to 12 if nothing happens when I take it again on Wednesday. Life throws you a curve ball you adjust and back up a bit. I'm not new to autoimmune diseases but GCA has been my devil so far. Have a good weekend. And thank you for being you. Marilyn

    PMR was no picnic either.

  • That is a massive HDL!!! No wonder the total is high!

    I'm not going to change any time soon ;-)

  • Here is the secret, Coconut oil. Really that's what I take amongst the other nutrients. The one that brought it up was the coconut oil. 265 is still to high, but I'm not going near the statins. My significant other was on statins, PPI and naproxen. Off everything except Zoloft, which I would like to triple and maybe it would help with the OCD. He cleans up after me before I have a chance to do it myself. Some women might like that, for me it's like taking away my independence, I really want to take care of myself. (Unless I can't).LOL.

  • Does coconut oil REALLY work? I bought a jar last summer - but just never get round to using it instead of olive oil for things.

    Heck - I'd take a OH who'd clear up behind me!!!! It's me clearing his crumbs up though...

  • I swear I take a tablespoon every morning. I don't cook with it because I don't cook. Eat out a lot. Also don't like the taste of hot coconut oil. It's. Called Natures Way. It has a green leaf on it. Also says Organic. I'll bet Amazon sells it. I buy it in my pharmacy. It cost between $12-16 dollars. I cannot tolerate the taste of any other brand. Before the oil my HDL was 60. Interesting but with all the side effects of pred. Which I am on so far 5 years (with a hiatus of 9 months while it went from PMR to GCA ), I have not had any infections.i have had my thin skin ripped off and visited the wound center often. Never getting infected. The herpes was it and fortunately it has not returned. My blood work is excellent. White count normal. The oil cannot help my CRP at 10 only I can do that. By the way increased klonipin. Went from 10 to 11 with pred will take blood Wednesday. Seeing rheumatologist Monday. He will want me to go to 40 not happening. If you cannot find this specific coconut oil I will mail it to you. Here they have sales buy one get 50% off second. I always have 2 in the house because pharmacy runs out. The very least I can do is make a trip to the post office a block away. The jar is plastic. I would send two. It lasts about a good month. That should be enough to see if it does for you what it does for me. Does Amazon deliver to your part of the Country. No other brand is edible. Let me know. Also helped my skin. Not paper thin anymore but still bruising badly. I assume you have my email

    PS. Do use olive oil to cook (when I cook).

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