UGH...UP TO 60 MG PRED

[Missus835]

Had to go into ER in Halifax this morning on advice of my former Neurologist (could not reach the Rheumie as usual). Bloods indicate CRP back up to 24 from 3. With all the ear pressure, some jaw pain, loss of hearing and eyesight slightly affected, they talked to a Rheumie, who has upped me to 60 mg Pred. for one month, which did not surprise me. I have to see a vascular surgeon (about a biopsy no doubt), a trip to the Victoria General Eye Clinic to check out the eyes and finally, a trip to "my Rheumatologist" who will be receiving a letter. I'm just so pleased that the doctor I saw listened to me and finally, I felt validated and as she said, at least now we have a plan.

Very, very glad I went in to the ER as when I tried to talk with my GP about this last week, he didn't have time and said I had to handle my visits with just one issue to discuss in his timeframe (although he was 15-20 mins late). The "issues" were PMR related.

Quite nervous about jumping from 14 mg up to 60, but realize it's necessary; just wishing it wasn't. Thanks for listening.

[Purpleazalia]

Pleased to hear someone in the medical profession listened and got the ball rolling quickly. Hope you soon see improvements x

[DorsetLady PMRGCAuk volunteer]

Better safe than sorry…let’s hope it get resolved quickly…best wishes.

[SnazzyD]

I’m glad but sorry. 60mg can be a bit hairy but you just have to keep telling yourself it isn’t you and it’s temporary. We’re here if you want to moan or cheer.

[SheffieldJane]

Just keep saying “ I am in safe hands now.” Like a mantra. Pred is a wonderful clever drug. I barely noticed my high dose apart from sleep being a bizarre concept. They soon get you down to a reasonable dose. Well done for negotiating all this and getting a “ good” doctor on side. Has your useless GP never heard of prioritising with limited resourses. ? 🤯

[Missus835 in reply to SheffieldJane]

Thank you Jane. I don't think he has limited resources necessarily, but a closed mind. He'll be getting a piece of mine though. LOL. They've just brought another doctor on board at this clinic and I'm going to try to transfer over to him. I am nervous about the 60 mg. as I work from home full time and def need sleep, but that's a very good mantra. I'm also one who believes in setting intentions, so that will be included. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Working full time might be difficult, but at least if it’s from home it is slightly easier.

And as said, hopefully you won’t be on the high doses that long -and you have to remember it is necessary to protect your sight .

As someone who had already lost sight in one eye and was on 80mg for 2 weeks, then 60mg for another 8, I can assure you, you’ll get through it.

[Missus835 in reply to DorsetLady]

I can do this DL. My sight and hearing is far more important than any job, but alas I do have to work even at 72. I'm so sorry you had lost your eyesight, I didn't realize that. Cheers to you m'dear. 🙌

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Thanks -tbh after 11years I rarely think about it nowadays -it is what it is…..but that doesn’t stop me trying to stop it happening to others.

You may find high doses are not as bad as you think…

Take care 🌸

[HeronNS]

I cannot tell you how happy I am that you had a good outcome from the ER visit. You may have trouble sleeping, but if you work from home you will probably find a way to create some rest periods through the day to recoup your energy. Good luck! 🍀

And try to get some good bright daylight early each day - a bit hard with the dreary weather, but you know what I mean. That will go some way towards keeping your internal clock in order.

[Missus835 in reply to HeronNS]

Oh thank you. I was very glad I went in. Would have gone yesterday, but for the snow storm. Yes. I'm generally up around 5:15 because I enjoy the mornings and like to take my time. My apartment is so bright, I have to put the blinds down while working so lots of sunlight is available. Anyway on to the next stage of this journey. Supposed to be going up to 10C on Monday and rain. Enjoy your weekend.

[Bcol]

Big jump, but peace of mind and well done the ER.

[PMRpro Ambassador]

Do you have any mechanism for reporting/complaining about the GP's attitude? As you so rightly point out, his refusal to talk about 2 things related to the same illness means he potentially put you at risk by failing to identify the possibility of the PMR progressing to GCA. It is similar to refusing to speak to an angina patient whose chest pain now has shoulder pain added on - and they are having a heart attack. Sometimes it takes a poke like that for them to realise what general practice is about.

[Missus835 in reply to PMRpro]

Yes, unless I decide this is not one of the battles I'm going to pick, am going to explore the avenues for this and also, the esophageal spasms and he didn't like the word "spasms" and "where did you get the word spasms from"; although they come right up thru the esophagus into the jaw, neck, back and sometimes shoulders, he felt were not angina, but did not take BP (as his wife had the week prior and was elevated enough that she mentioned perhaps a stress test to rule out angina). She has a Well Womens' Clinic in the same building and she did not want to overstep him and so left notes on my "file" which are completely digital. As far as I could tell from sitting behind him, because he doesn't look you in the face, he completely ignored this and when I tried to mention it, he just shook his head. HE has never take my BP in the handful of times I have seen him. So no stress test. I had to reschedule to see him Wednesday next to discuss the clonazepam (which I've taken for 20 years plus, for generalized anxiety). This is where he told me about managing MY time. It is .5 mg (not even 1 mg) once per day, but he does not believe in benzodiazapenes and had refused to repeat the prescription. He prefers anti-depressants. Trust you me, I am one to "fight" the battles and that's how I finally got into the ER and a plan of attack for the PMR or whatever it turns out to be. What I will do on Monday, is call the clinic, tell the Office Manager and request a transfer over to their new GP. If this fails either I go back on the GP wait list for Nova Scotia or fight. He clearly has tunnel vision when it comes to his bruised ego. I don't think he liked that I gone to see his wife, but it was for a bad rash under my breasts and one of our members suggested to have it checked to ensure not inflammatory breast cancer. She, on the other hand, is a listener.

I could go on forever Pro, but wishing you a good day. I will be taking my first 60 mg dose of Pred shortly and set the intention for complete success with it. Thanks ever so much for your response. I appreciate all on this forum so very much.

[PMRpro Ambassador in reply to Missus835]

Strange isn't it - my daughter's practice in Yorkshire has a peculiar set-up, several doctors are married pairs and one in particular the husband is pathetic, his wife excellent! I don't know why they go into general practice if they aren't prepared to be generalists and look at the big picture.

Here I have a real problem with a couple of doctors in internal medicine in the hospital, one woman in particular. I asked my GP was to do after her last fiasco - stopping my heart medication claiming it was doing nothing! She hadn't even SPOKEN to me until she told me that when she asked if I wanted to go home! Needless to say, I did. Luckily I had the confidence to ignore her though it took me several days to recover from the day of messed up meds when I was blue-lighted in. The ED was fantastic, but she was on duty on the ward where I was sent for monitoring. My GP told me to request a different doctor on the grounds of breakdown of relationship - but I am scared to risk an admission at the weekend in case she is on duty and there is no-one else.

[Missus835 in reply to PMRpro]

You went through it Pro! I'm so glad we have this website for education ourselves. Knowledge is key when visiting the "medical pros". This site is invaluable in that regard. Thank you for all the time and effort you invest in all of us.

[Rugger]

Wishing you all the best for a good outcome to this latest chapter..... (I agree with everything said about your GP. Please complain for the sake of other patients too.)

[Missus835 in reply to Rugger]

Before I saw him for the first time which wasn't but a few months ago, I read his reviews (which were bad, except for a couple of folks who touted how wonderful he is). So instead of copping a pre-conceived opinion, decided to go in with an open mind. This is because in NS, we have to wait so long on a list to get referred, due to doctor shortages. I felt lucky at that time to have gotten referred, but this is due to the underlying condition of PMR and of course, my age 72). I do think of all the other folks who see this quackadoo and maybe I need a good battle as a distraction for now. Thanks for your response and I will take it under consideration.

[Sharitone]

Bad luck, but so glad you got the right treatment in good time.🙂

[christi48]

Good luck. I hope things go well for you!

[KASHMIRI1]

I was prescribed 60mg of pred at the start of my GCA experience. I found it ok as it made me feel so well. A bit hyper at times but even that was a pleasant change from feeling so awful. One thing l would add is if you feel tired at that level is to have a lie down and a sleep. Working from home may be helpful on that front.

[Missus835]

That's exactly how I feel. Lots of energy for a few hours. Then a crash in the afternoon. Then sleep has started to evade me at night. It will pass I know. The extra energy is nice though. Thanks for your reply.

[cycli]

Sorry you are back up to 60. I'm annoyed that I am back to 25. i don't think there is any point in you having a biopsy as you've been on pred too long like me. My specialist agreed with me that it would most likely be a negative result. GCA and PMR are very unpleasant bedfellows. Hang in there.

[Missus835 in reply to cycli]

I agree, but still going to see the vascular surgeon to what she has to say. Have an appointment with the Opthamology Clinic on Thursday, who will check my eyes well and the degree to which the cataracts have grown, if at all. Thanks for your reply. Cheers!

[cycli]

always good to check