Further to my previous two posts, I had my appointment with the GP today, which was interesting. No mention of fibro. Yay! Mind you, this was the same doc I saw right after diagnosis and the guy who sent me off next day to the hospital ophthalmologist to get my eyes checked out to make sure that I don't have GCA.
I told him that I needed to review the PMR and the pred, as the grumpy rheumatologist didn't believe I had PMR and told me to come off pred. Bless him, first question was how was I feeling and when I told him pretty rubbish, the PMR symptoms are re emerging and I have zero energy and back to sleeping all the time, he asked me what taper I had done and what dose I had come from and the timescale. He was impressed with my 0.5 mg drops and the fact that I waited to see if I adjusted to the new dose before I dropped again. And that the drop to 2 mg feels too much.
I mentioned the problem with my knees and also how bad my my neck is and that I have jaw problems. He thought that both knees and neck were re-emergence of PMR symptoms. He winced when I mentioned my jaw and I said that I didn't have any other symptoms of GCA and when I explained more, he considers it to be the temporomandibular thing and encouraged me to continue with the massage I have been doing, even if it feels sore.
During the conversation, I mentioned the grumpy rheumatologist by name and that we had a difference of opinion abut how long I had had PMR, as I think it is about 20 years on and off, and there was an audible snigger and the snigger was not aimed at me. I suspect that I might not be the only person who gets fed up with the grumpy rheumatologist. I haven't had acute symptoms all that time and it has followed a pattern of flaring and remitting, that I think the flares may be associated with when I get a viral infection and/or periods of high stress and certainly the last two flares followed a viral infection and he commented, that is highly likely.
He was impressed by still being able to swim a kilometre and that I was using the weight machines again. That was after I had said that I am a bit chubby and so people ( i.e doctors ) often underestimate my level of physical fitness. He wants me to keep up the weights when I feel up to it. I said that I thought that lack of shoulder involvement had put a question mark over the PMR diagnosis in the past and he said that it means nothing; for some people it can be hip or shoulder dominant or both.
The subject of AA came up and I said that I didn't appreciate camping out in the toilet for 1 day a week every week, so I stopped after 3 weeks. He wants me to have injections and he mentioned one of the "mab"s, but the name has slipped my mind. He said it is well tolerated. Could it be Denosumab? I need to follow up and check what it was. It might be on my notes. I made it clear that I wouldn't have anything that might prevent me from having dental treatment and that I had never had a DEXA scan.
Also, that I have put on weight (12 lbs) over Christmas after my diet had lapsed and was concerned that my hba1c might have gone up again. I told him that I had cut out added sugar when I started pred and until I went on holiday in October I had not put on any weight. That I was back on track with eating foods with no added sugar and he wasn't worried about the weight gain. He thought that I would lose again.
So the outcome is to increase pred back up to 4 mg as he is really concerned from what I have told him that I shouldn't have another flare. He thought I might need a low dose of pred long term. He will see me after 2 months on 4 mg, unless I have any other worries, and he will arrange a Dexascan and then the "mab" injections if needed. Also, the usual blood tests for markers and blood sugar.
He is also more concerned about my lack of physical activity from not taking enough pred to control my symptoms, than the side effects of pred.
Sorry, it is so long. I wanted to dump this somewhere before I forget what he said. This guy seems to have a lot of experience with PMR and really listens. Restored some of my confidence in the medical profession.
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However - if he is talking about denosumab (6 monthly injections) the same applies for dental work as for ordinary bisphosphonates. Before starting anything, consult your dentist for their view and getting any work done. Prof Mackie says that when SHE speaks to dentists the responses she gets are far more nuanced than a lot of patients report. I was discussing this with her at the weekend as I have just had a zolendronic acid infusion (annual). I think I need to do a post about my experiences and findings in relation to it. So keep an eye out ...
I think he is a pretty skilled physician. My friend has some neurological issues; it's a long story, but the way that he resolved her problems and read the riot act to the relevant department, impressed me.
I've just checked my notes and it doesn't mention what he was recommending for the bones, but he has requested the DEXA scan as he said that could be a long wait. For sure, I will check with the dentist. The guy who did my implant last week was very relaxed about the AA tablets, but not so much about the infusion. I think I will have plenty of time to check the infusion/injections. tbh, I am pretty nervous about being given any kind of depot, as once it is in, you are stuck with it, which can be pretty awful if it does not agree with you and I need to know exactly what I am letting myself in for. I went through 6 months of hell in my 30s for another issue and I don't care to repeat that. Having PMR is bad enough. I don't mean that I won't have it, just that I need to be in a position to weigh it up beforehand.
I must admit I would not take anything for my bone density until someone had proved to me that I actually needed it. I hope you can get your Dexascan soon.
Also, I have an idea that the opinion between different dentists varies a lot. I've had so much contradictory advice from different HCPs and their approach to my PMR that I wouldn't be surprised if that tendency can cross all disciplines. It's hard work trying to sort the wheat out from the chaff.
As I said - the infusion problem applies for their use in ONCOLOGY where the dose can be 15 times what we get as it is given every 3 or 4 weeks, A sensible discussion with a dentist, maybe at a dental hospital, is called for. Denosumab is similar and has the same problems but the risk of osteonecrosis is lower:
Unfortunately, either you stay on denosumab long term or you must switch to bisphosphonates for some time when you come off as there is rebound loss of bone density on stopping it which doesn't happen with zolendronate infusions.
If I had "never had a DEXA scan" I wouldn't agree to anything as permanent as an infusion or a 6-monthly injection of a drug that I didn't know I needed or not! I have osteoporosis and my GP mentioned Denosumab, but my Rheumatologist said it was "overkill" and advised an 'ordinary' bisphosphonate. (PMRpro has explained about the rebound loss of bone density if you stop Denosumab, so it's a permanent thing, or go onto something else when you stop.)
Have the DEXA scan and then discuss about bones with your GP. As you are "a bit chubby" and physically active, your bones might be fine - who knows until they have a look?!
Its mad how they all differ. My rheumy went immediately to Prolia which i felt was overkill as ive just slipped into the osteoporisis range. Im terrified of the lot of bone meds but will probably have to give in as i do have bad back issues already. Maybe the infusion!!!!!
a note re dental! I have been trying to get a back molar removed for 6+ years. I’ve suffered 7 bad tooth infections in that time. I was referred to hospital but the surgeon said I was at high risk of necrosis of the jaw, & wouldn’t remove it. I tried 5 other dentists, & all refused to do the extraction. I have a new dentist & she was very worried when I had a bad infection 3weeks ago. I stopped taking alendronic acid because of stomach issues & changed to risenodrate, but after the dental issues started I stopped risenodrate. I’ve been off it for two years, but my new dentist said she wasn’t willing to remove my tooth, & referral to hospital would put me in a 6 -12 month queue, & then it may not happen. I cannot believe a drug, just taken once a week, can stay in your body for so long!! Years & years! I hasten to add that the tooth is heavily filled & is not suitable for re-filling or root canal. One dentist said it was bound to splinter & she couldn’t pick the bits out in the surgery!! Luckily, a dental surgeon who worked in London hospital for years has joined our practice, & said she would consider it. It was postponed due to another infection, then due to oral thrush, but after 7 years it went ahead on Thursday. She spent 15 minutes warning me about necrosis of the jaw, the difficulties with this particular tooth, & discussing my health (I have 11 named diseases & take a lot of tablets). We then decided to go ahead & I signed to say I knew all the risks & that it was an ‘extraction of special difficulty’. About 30 minutes later it was out, in one piece. But the tissues underneath were bad & she picked out a large piece, then scraped all the rest out, as she said, going down to the bone. Now all we can do is wait. I’m very swollen indeed, very bruised, I have a large weal inside my cheek. I’d love to be happy, but with necrosis possibility hanging over me, I’m just concerned. Part of me now wishes I hadn’t gone ahead. I’ve never had revolting bits removed from underneath a tooth, or a tooth extraction like this one! I’m now back on antibiotics again, naturally, &, after 3 days, unable to do much (partly due to flareup of both polymyalgia & fibromyalgia). It’s your decision, but I felt I should write my experience!
Thinking of you and hoping that it starts to heal very soon. It's early days yet since Thursday, but you are rid of that 'foreign body' and its "revolting bits" (yuk!) that have caused you so much pain for so long. I'm sure you're doing all you've been told to aid the healing process and hoping you'll feel so much better without it. xx
I was going to message you to see how you are, & how long it takes before I know I haven’t got necrosis!! It’s only day 3 & I’m very impatient. Just dreading empty socket or necrosis. I had to sign to say I know the risks & they’ve been discussed. Wondering when I can be off soft food, too! Never had to fuss about other dental extractions I’ve had, but starting to realise this is different! Still represent a hamster…David says I look lopsided!! I’m following all the rules, honestly, but looking forward to eating again! It’s soggy cornflakes & honey for breakfast (only cos have to eat something 4 the antibiotics), soup for lunch. Tonight it’s macaroni cheese! Last two nights have been omelette! I bought a chicken for tomorrow night…that’s gone in the freezer! Right, time for another salt rinse, & to see what the ‘white part’ in the ‘hole’ looks like this afternoon, OMG, how I hate the whole dental universe!! S xx
I'm sure you're doing everything to avoid a 'dry socket' - leaving the clot intact and being gentle with the rinses! I don't know about osteonecrosis, as I escaped that and hope you do too. My tooth was also extracted in one piece and I'm sure that helps the jawbone. I was only off Risedronate for one year and you've been off for two, so let's keep everything crossed that once the swelling subsides, you'll be able to get that chicken out of the freezer - chicken soup is yummy!!🤣
I know you've really gone through the mill with this tooth, but hope you'll soon be able to thank that ex-hospital dentist when all this is behind you. 💐 Be patient!
PS The hospital dentist asked me to see my GDP 6 weeks after the extraction and all was well then. I assume your dentist has suggested a follow-up appointment?
Yes, she’s seeing me 4 weeks after extraction. The hole is complete white this evening. Well, not white, creamy colour. But no increase in pain! I had homemade soup…kale (I have macular degeneration & that’s the best source of eye aid, carrots (good for eyes) half a parsnip & it was delicious! The soup machine made it (my one kitchen gadget!) s xx
Though my new dentist was a bit angry, & said didn’t they all realise that infection is really important & that I could end up with sepsis if nobody took it out! She asked the surgeon who has joined the surgery if she would consider it (she was also annoyed that others had left me to have so many infections!) S x
If you haven't seen it already have a look at my story.
Also, keep in mind that if you have "low bone mass" aka osteopenia and still are recommended a bone medication it is wise to be checked thoroughly for "secondary causes of osteoporosis" as not all bone thinning can be blamed on pred or age. Even early osteoporosis can often be reversed without medication.
There really is no hurry, bones change slowly, so you don't have to make up your mind until you have all the information at your fingertips!
Thank you, Heron. I am considering asking to have the scan done privately, as I have been reading about long delays for scans. I am 65 now, so it would be good to have a baseline to work from, before I get any more decrepit just from increasing age. Then at least, I have something to compare it with going forward, if things get worse.
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) often underestimate my level of physical fitness. He wants me to keep up the weights when I feel up to it. I said that I thought that lack of shoulder involvement had put a question mark over the PMR diagnosis in the past and he said that it means nothing; for some people it can be hip or shoulder dominant or both.
GP diagnosed pmr before bloodwork done
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PMR and CLL
Living with PMR with no prednisone
