You realize he told you to complain of side effects from the New cocktail, right? If Minocycline doesn’t cause some stomach upset (especially with MTX) you either aren’t paying attention or have a cast-iron stomach. I suggest you dose on Tuesdays as in TACO TUESDAYS with extra salsa… (I say with Tongue firmly planted in cheek - or not)
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Oh yes, the old Taco Tuesday extra spiced trick! Why didn’t my rheumy mention that?
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Update: Day 5 without prednisone! Other than a few steps backwards in pain management and the return of fatigue, I think I might just have my ‘roid addiction beat! I’m no longer getting the headaches that were typical of lower the dose. So now I am back to where I was a year ago trying to cope with pain and fatigue.
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I know it doesn’t probably feel like it - but seriously well done. You should ostensibly feel a little better as more days without it progress, 5 days isn’t a long time yet. Note how you feel in 5 weeks.
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Thanks! I’m encouraged by the fact that the brain ache is much better and I can think without it hurting. But the body aches just keeps getting worse. I thought I was finished with heel pain but both are yelling at me and I haven’t even stood up this morning. Without prednisone, that dreaded stiffness has returned…you know that resistance to moving right after being stationary for a while? I guess it had faded and I had thought it was the one result of MTX and or Sulfasalazine. But who knows what tomorrow brings?..always an adventure full of surprises! When people ask me, “what’s new?” I’m not sure what to say…new, new or old new? Mental health is very important on this road and when the brain is hurting literally, emotionally or even spiritually, it needs effective attention! Pain comes in many forms and Hope carries us through the waves that pound.
Yes Poo is absolutely right - it took me some time for the withdrawal to completely wear off. It’s a big deal - getting off prednisone, yay!!! I know it hurts now, but hopefully better meds will be forthcoming soon
Prednisone update: Its officially two weeks since I last had prednisone and I feel like I am off of it. I’m no longer having headaches that were common when ever I would drop the dosage. Energy is down and pain is way up. Unless i take 400mg Celebrex, I am so miserable! In a few weeks I ill contact my rheumatologist (maybe sooner) to let him know how dependent I am on an anti-inflammatory. The pain in my knees, back and feet is as bad as it has ever been and my zip is gone…oh yea… “knackered” again!
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Well done you. Yes and it’s not not a nice place to be but at least better than all the headaches etc. However I wouldn’t wait to start making contact with your rheumy, I’d start right now. The more they hear how intolerable it is and how miserable you are, the more ammunition they have to get things moving. After all it’s a ‘funding on need’ issue if it’s anything like the NHS. Yes of course they talk about budgets and deficits etc but essentially your rheumy’s job and funding panel’s job is to fund the meds to those that most need them at any one time. So make your ‘need’ for meds loud and strong. No point at all in waiting. Keep the pressure up. Why waste all of your summer?
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My only reason for delay is to give enough time to prove that the minocycline isn’t helping. I was told about 6 weeks. It was five weeks yesterday. But you are right and giving the rheumy the info regarding my state of affairs seems right. Taking maximum doses of Celebrex and Tylenol isn’t kind to the body and the diarrhea for two hours post minocycline is pretty controlling of ones daily affairs.
I assume that a biologic will take another 3 months to work… if the first one works. Not sure what to do in the waiting. It seems that the enthesitis is on the increase. Pain is really boring…it’s like watching the same annoying tv commercial week after week! By nature and experience, I fix broken things and I’m not winning right now. The mystery of the onslaught of PsA keeps me thinking that it might disappear as it started…unknown reason but gone. Still struggling with the permanence of this battle but hoping for an active life surrounded by the blessing of a huge family and a strong faith. (And when all else fails, there is my stash of prednisone 
) No, I’ll wait it out. Peace
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Were you warned this might happen with any suggestion that you should tough it out if so? 'Cos some might consider such a persistent side effect a ‘fail’ for the drug concerned. But anyways, you’re nearly there so just saying 
Yes I too am still waiting for PsA to go. Though where are we … um … 8 years since diagnosis. I’m a very slow learner but actually just occasionally it does occur to me that it may stick around.
We all want to see you getting a shot at a biologic for good reasons. It’s hard to know for sure but it does look as if for most of us there is a very definite ‘before’ and quite a different ‘after’. Though patience, faith, whatever it takes may still prove invaluable for the first few months on a biologic at least. The way you’re talking now, despite your courage and level-headedness, is very ‘before’.
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I just sent an email to my rheumy in point form to inform of my current condition. He likes using email for communication and I await his response. I’m sort of learning how to “work” the system, trust my rheumy and push things where and when it is beneficial. The funny thing is that I am getting FREE poo_therapy and diarrhea counselling at the same time! I hope we get to the bottom of this before I get split ends! HeHe.
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Well…I can’t tell if I passed or failed! I just got an email back from my new Wonder-Rheumy! Here is an excerpt:
“Please discontinue the Minocycline because of side effect (diarrhea).
PLAN: Return to clinic for Mantoux test/chest x-ray requisition in
anticipation of treatment for biologic disease modifying anti-rheumatic drug therapy (Humira would be my best advice for initial treatment).”
Considering I’ve only seen him once (June 14/20) I’m pretty happy with the progress. Now I can stop the extra hot Taco Tuesday’s! Isn’t @tntlamb smart?
Is there a bio-similar for Humira?
Hey, thanks for all the direction and encouragement. You have been a tremendous help!
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There are several biosimilars to Humira, Hadlima is the only one of them to my knowledge that is approved in Canada. Even that will vary province to province. They have a 18 month or so record with it so your Wonder Rheumy may be confident in it or know to go with brand name. Either way its a great starter bio. Still my favorit of the 4 I have had.
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Have you got to have a biosimilar? I can’t tell the difference between Humira & the biosimilar Imraldi, the transition was seamless. Both damn good all in all.
This is wonderful news!! Where’s the party?
Finally! Whoopeee!
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I’m just wondering about bio-similars because I don’t have personal coverage. I’ll have to pay a portion of it depending on 2018 household income. I still have a some steps to go through but it seems like this ball is in motion.
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Fantastic Amos, definitely heading in the right direction.
Before I got to reading this update I was sitting here thinking why is this guy putting up with all this diarrhoea from the minocycline???
Yes, yes yes, way to go @Amos, I’m so glad you made contact with your rheumy. I’m so glad he’s still appearing to be on the ball and prepared to make the ‘Plan’ too.
You’ve made my morning now. Incidentally humira (or rather its biosimilar Imraldi) didn’t like me. Oddly made me poo for England amongst other things 
but it seems I’m of a huge minority in that. It really does tend to work and help for the majority. And @Sybil is spot on - there really is a ‘before biologics’ and ‘after biologics’ and regardless of whether the biologic is properly working for you, the ‘after’ is miles better.
I was told starting off on biologics (a biosimilar to Enbrel was my first) that we can be slow responders to it or fast ones. Anecdotally it does appears many of us are fast responders. The normal review time for Humira and Enbrel is the usual 12 weeks though.
I’m truly so glad you’re on your way now.
Oh yes, I meant to jump in earlier and got sidetracked, but @Poo_therapy is right - even though we need to give the biologics some time to see if they’ll work before switching, some of us do respond really quickly. I can remember my first biologic (Enbrel), it literally started to work within days. It might not be that quick for you, but most people do respond to one, even if it’s not immediately, and sometimes not the first - but I t will get better 
.
I just had my loading dose (infusion) of Stelara today after being off meds for a short while - I’m very optimistic and looking forward to feeling better.
Also, I have Rheumy envy. That ones definitely a keeper!
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I just wish Wonder-rheumy was younger than me and will be around for 20 years! His older brother is also a doctor and they run their clinic together…the older one looks after all paper work for funding etc.(he’s in his 70’s) He phoned me yesterday to ask if I had any questions, made some suggestions about upcoming tests and how to save a few dollars. He said, “my brother (the rheumy) is at the lake cabin but we talk fishing, sports and patient care at any time if the day”. They seem to love their work.
I still laugh at his reaction to a comment I made about the young previous rheumy (he asked why I left her) that I started with…Leaning back in his chair and folding his arms…“these new millennial doctors haven’t got a clue about patient care. We are paid well to serve you the patient. Along comes a virus and they all go into hiding!”
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Hope it does its job for Jen. Really hope so.
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