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Probably PMR Waiting to see Rheumatologist
I haven’t seen a rheumatologist yet because they are in very short supply in my area. I did manage to get an appointment with a rheumatology PA in a few weeks. An ER doc gave me a working diagnosis of PMR (It’s a long story, my PCP is useless). ER doc put me on a steroid taper which initially helped quite a bit, but when I went down from 15mg to 12.5mg the morning pain all returned with a vengeance and lasts into the afternoon. I’ve started taking 15mg again and it seemed to help a little more today.
Couple of questions: How long does it normally take to see a rheumatologist and get an actual diagnosis? I am a type one diabetic and the steroids are making my blood sugar very hard to control even though I’m using almost 4 times my usual amount of insulin. Question 2: If they diagnose PMR how long before we can start using an IL-6 inhibitor so I can get off the steroids asap. I’m barely eating anything even though I’m starving because I’m trying to keep blood sugar from going any higher. For those who understand type 1 diabetes, I’ve had small to moderate ketones for days. I don’t feel sick, but I don’t’ want to end up in hospital in DKA. I don't have an endo because they are also in short supply (4-5 months for new patient). Besides raising my blood sugar the steroids are making me very agitated (feel sorry for my partner). I will not go on methotrexate because I already have some weird breathing issue that nobody has been able to diagnose or help. I know methotrexate can cause breathing issues (friend on it for psoriasis) and I don’t need more issues. Thanks in advance.
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Hi, so sorry to hear all that you are going through. I am fortunate to live in an area that there are qualified doctors. There are wait periods, but fortunately I was on waitlists & moved up quickly for my initial consult. I had an awful time with Prednisone and have been very successful with Kevzara for over 18 months. It's been a life changer. Pred didn't lower my ESR or CRP, Kezvara has kept it down. I have many other health issues that come into play, as well. I can truly understand your issues with T1D. My son has it as a result of cancer treatment. He recently had to go on steroids for severe asthma, his BS was out of control & he was using more insulin than ever. Even worse, his BP became seriously dangerous. I wish you the best of luck finding proper care, it's so important. Hopefully it won't be long.
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2 ReactionsThank so much for your kind words. It's encouraging to hear that people have had good luck with IL-6 inhibitors. I hope you and your son the best.
I am very glad I found this support group. So helpful to not feel alone with the struggle of having to wait 4 months to see a rheumatologist for my formal PMR diagnosis and formal treatment plan. I'm concerned about the length of time I'm on 60mg prednisone, which my neurologist dialed back to 40mg in 4 days after a negative gca biopsy. My shoulder and hip pain is slowly returning, and I feel lost on what I need to do if anything. Not having a structured understanding of what the experts will recommend given potential side affects of being on a dose this high along with affects of tapering down too quickly on multiple fronts is unsettling. I'm frustrated about the 4 month wait, but my hands are tied. I'm left with educating myself in this forum until my March appointment.
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2 Reactions@mwhite6262 me too. I am so grateful for this forum and equally the people who are on it. I can’t say thank you enough to all.
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2 ReactionsOur experience is similar.
Q#1. Even having a referral from an ER doctor (8 weeks after PMR diagnosis which triggered a blood clot DVT, and was hospitalized for 3 days) I was told 3 months by the phone scheduler (the day of my discharge.) The next day I went to the rheumatologist’s office in person with my referral in hand and kindly shared my situation with the receptionist. She got online and someone at that very moment cancelled an appointment for the very next day. She asked if I could make it and I said yes, and did.
Pure luck!
Q#2. Because of my negative reaction (DVT) to the 40 mg per day (which had tapered to 30 mg) the rheumatologist agreed that I should immediately start Kevzara and continue to taper off Prednisone (as rapidly as possible.) So, from diagnosis to Kevzara is 9-10 weeks for me, but I had a complication.
After the hospitalization, I was very assertive and lucky.
My insurance has approved the Kevzara, my pharmacy is able to receive it and dispense it to me, and I am waiting (now 2 days) for my rheumatologist to send the order to them, if she hasn’t already. This has added another week (10 weeks now since diagnosed.)
Prednisone complication.
Assertiveness
Luck
That’s my experience.
I don’t recommend the negative reaction/complication to Prednisone though.
Best of luck to you.