Update after a very long week

[Boozsa]

I have not been able to see my GP since the negative TAB and the surgeon’s recommendation to still treat me clinically. I had a very bad week, terrible hip/pelvic pain couldn’t turn over or get up from bed, sensative and painful shoulders at top of arms, bad bad headache in the temple and jaw pain ... went to clinic as walk in today and was given Tordol and 40 mg shot of solumedrol. If this truly is PMR will the solumedrol give me some relief? Even if temporary? They talked about putting me on methotrexate, is this like prednisone?? I feel confused , they say it’s inflammation but refuse to put me on a prednisone taper because of osteoporosis and diabetes risks... Should methotrexate help me if it’s PMR??

[SnazzyD]

Never mind and long week! More like a long 5 months. This whole story seems like a bizarre collection of uncoordinated knee jerk responses. If there’s just one irrefutable fact in this it’s that you got relief on 60mg Pred, Solu-Medrol call it what you like. Guidelines say that if the symptom profile fits, especially if relief with Pred, a treatment protocol needs to be started. Random ‘shots in the dark’ do you a disservice and potentially will add up to more accumulated Pred and exposure to unwanted effects plus fluctuating control of the disease. My understanding is that the likes of Methotrexate are used in refractory cases when a fair crack of Pred for months and months isn’t working, not as a first line treatment. They can’t say Pred is not working because you’ve never had a consistent dosing program. Metho is not benign either and shouldn’t, in my opinion, be offered as a safer option, it’s just different.

So, they fear diabetes do they? My experience is that docs see weight gain and diabetes as inevitable. Why? I don’t know. All it needs in nearly all people is a very very low carb diet. Not no carb, but you can get plenty from root veg. I never gained weight and my blood sugars have never left the middle of normal range, others will say the same. Some reverse their diabetic status with this.

Bones. If they are that worried have they given you a DEXA scan? No? Ask for one. If nothing else you need to know if any osteopaenia is due to factors before Pred use long term or the Pred. At your age if you are were already in the danger zone, other questions need to be asked. Yes? Was it that bad that Steroids have to be withheld? If it’s a little dodgy (like mine), it still doesn’t mean that Pred is contraindicated, especially if you take VitD and calcium plus a bone diet.

My next question is why are you being treated by a GP and a surgeon, neither of whom are likely to be specialists in GCA or other vasculitis? These are serious conditions. If all you have told us is complete and correct, the fact that they are faffing about with random injections of steroid and strong non-steroidal anti inflammatories (which also have risks) suggests they are not up to date. If they worry they are wrong then it is out of their range of competence and you should be referred on to a proper rheumatologist or vasculitis specialist.

[Boozsa in reply to SnazzyD]

Hi. Thank you for responding. It all seems unbelievable right! To me it seems they are ignoring all common sense. To answer some of your questions I did have a DEXA scan, two now. I had a hysterectomy when I was 28 and I have been in menapause since I was 29-30. I am 44 now. I had a terrible time with hormone replacement therapy so after trying different ones 1-2 years they took me off all hormones. I did eventually have to go on thyroid medication. The reason for the GP and surgeon situation is a complicated mess but here goes... I live in a very small town (3,500) people in an isolated part of Washington State, it’s the Olympic Peninsula and surrounded by Olympic National Park, Seattle WA is 4 1/2 hours from me by car. So 7 different GP’s since this all started ( 2015) most don’t stay long. I was referred around over and over again to different specialists put on all kinds of medicines and they never worked. Some relief throughout this when I would go to ER or walk in clinic and get 2 week prednisone dose packs or injections(like yesterday) Finally saw a rheumatologist in 2016 and he dismissed me due to normal labs and negative hand xrays for arthritis. He also did a DEXA and it was normal. I say normal labs but I had 3 CRP labs that were elevated by 2-3 points prior to this visit and at this visit my ESR was 19 so borderline. Anyway, he would never see me again. I emailed, I called he refused sent me to physical therapy. I have a new appointment here on Feb. 11 with a different rheumatologist but this doc has to approve it in order for me to have the appointment. PT I think caused another flare up. It’s happened 3 times now actually. I get sent to PT for either hips or neck shoulders, I get worse they send me back to GP. Ok so then new rheumatologist in 2018. It took that long to get referred to another one. He did labs they were normal again. ESR on the upper side of normal but normal. Negative RH, negative ANCA?( think this is the name) I will see this rheumatologist again on Feb 19th now. After this my GP referred me to a vascular surgeon/specialist for possible GCA. The night before this appt the office called and said he didn’t treat this condition and sent me to a general surgeon instead who did a TAB. Note vascular specialist never even saw me first. TAB was negative but surgeon recommended clinical correlation due to my symptoms and all the on/off prednisone. My GP will not treat me will only refer me so has to be a rheumatologist amd holding hope for the upcoming appointments. I went to the clinic yesterday as a walk in. It was a nurse practitioner who gave me the tordol and solumedrol injection. It was obvious the kind of pain I was in. I was just so baffled when she gave me that but no one will treat me with prednisone the right way. This is the same clinic where my GP is so they all know me. I didn’t understand the mtx, humira suggestion at all. I have had some bursitis of the hip and degeneration of the trochanter but no known arthritis. It’s a mess for sure and I am sooooooo overwhelmed trying to navigate it all and get something to help. This last week and the previous was awful. I was beyond desperate yesterday, I’ve lost so much weight, l look terrible, and I had some pretty bad depression this go round. Anyway it’s been 13 hours now since the solumedrol and symptoms are dissapting. Not gone but a huge improvement over yesterday and the prior weeks. The scalp sensitivity is gone and even just that made me feel so much better. I won’t try any jumping jacks or anything today LOL! but I can get out bed normally without tears. Hopefully it continues to get better and gives me a few weeks of relief. I know it’s not the proper way to treat me but I’ll take it for now. I don’t ever want to feel like I did last 2 weeks again. Maybe the injection will point the upcoming rheumatologists in the right way 🤞I hope I answered your questions. I tried to be brief but I could write a book at this point

[SnazzyD in reply to Boozsa]

I’m so so sorry you’ve had all this to contend with. Perhaps somehow somebody needs to feel accountable for your actual wellbeing. You becoming informed is key, but at a time you feel all over the place. I remember in my early days, newly on 60mg of Pred, eyes spinning in my head having just found this site. It felt so unfair that I was having to do that but it helped me take control and feel less like a victim. Above all it helped me get the courage to challenge medical decisions that I felt were not made with my needs at heart or with enough evidence behind them to justify the negatives.

[Boozsa in reply to SnazzyD]

Thank you. It’s been a roller coaster but I still have hope and today is the best day I have had in over 5 months so I’m thankful. I really appreciate all the advice and support.

[PMRpro Ambassador]

mtx alone is unlikely to work for PMR - pred is the mainstay and the best one hopes for with mtx is that it makes a given dose of pred more effective. The solumedrol SHOULD help for a time if it is PMR and it is possible to manage PMR and GCA with the depot form which releases over an extended period. It isn't unusual for someone to be diagnosed with PMR because they had a shot for shoulder pain - and realised all the other aches and pains due to PMR have gone.

mtx is a DMARD, a disease modifying anti-rheumatic drug, used widely all over the world for rheumatic arthritis and similar illnesses, PMR/GCA are not arthritis, they are due to vasculitis, very different.

To add to Snazzy's comments: I have been on pred for 9 years, there is no sign of either osteoporosis (no significant change in bone density over 7 years) or diabetes and any weight I gained, I lost again, both by consistently eating a restricted carbohydrate diet. Not no-carb, low carb.

And you need competent medics - you don't at present.

[Boozsa in reply to PMRpro]

Thank you for helping me clarify. I felt so confused especially when I realized solumedrol is another form of prednisone. I’m guessing they gave me the injection but don’t want to treat me long term on prednisone. The MTX baffles me because I have always tested negative for RH. It’s all becoming very overwhelming but I may see a new rheumatologist at Virginia Mason in Seattle on the 11th of Feb. I went there once in 2016 and the first rheumatologist I saw refused to see me again after the labs he did came back “normal”. My ESR was 19 at the time so borderline. Now for me to see a new rheumatologist there he has to give his permission and I’m still waiting to hear if I’m “allowed” to keep the new appointment. So because that is ridiculously complicated I have an appointment with a rheumatologist at a smaller clinic on Feb 19th as well. These two appointments are my last hope. My GP will do nothing it has to come from a rheumatologist. I agree I just think he(GP) could have started treating me and then sent me to a rheumatologist for further treatments and or diagnosis. There has been ALOT of incompetence.

*Its been 12 hours since the injection and head, hip and shoulder/neck symptoms are dissipating. Not gone but a drastic improvement from the last week. The scalp sensitivity and the swollen drooping right eye looked almost back to normal when I woke up.

[PMRpro Ambassador in reply to Boozsa]

Not 100% conclusive - but very suggestive. Someone has to accept that. Good luck

[Boozsa in reply to PMRpro]

I agree. I mean the difference between yesterday and today is remarkable especially as the day goes on. Nothing like what I usually experience in the mornings. Thank you once again for your insight. You really are the PMRpro I’ll keep you guys updated until then good health to everyone

[Boozsa in reply to PMRpro]

After getting the 40 mg solumedrol shot all symptoms improved within 12 hours. PMR symptoms are still under control but I’m having a return of cranial symptoms. Is this because the one time 40 mg shot isn’t enough to control the TA/GCA symptoms for very long? Or does this mean steroids aren’t working for cranial symptoms?

[PMRpro Ambassador in reply to Boozsa]

40mg is the bottom of the oral dose range for GCA - and you wouldn't really expect even more than 40mg to have a great effect for more than 24-36 hours, if that long. Had it been Depot-Medrol then I would have expected the effect to last longer as it releases over an extended time.

I really think your doctors need to get a grip...

[Boozsa in reply to PMRpro]

If I call and tell them this today they will not take any of the symptoms relief or dosage into account. All they will here is steroids didn’t work. It’s a problem and I feel now like I can’t even just be honest with them about how it worked, is still working in some waysbut not all the way. At least for now I slept well last night, ate yesterday pain free and I can move about the house today and wash my own hair and stuff. The cranial symptoms aren’t nuclear level but they are there. Maybe I can still have a decent day today. It’s the small things at this point. Thanks again I looked it up on my patient record because I wasn’t positive if it was solumedrol or depomedrol. It is charted as 40 mg solumedrol