Frustrated : I’m just so frustrated! I’m going... - PMRGCAuk

PMRGCAuk

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Frustrated

MaryA_ profile image
23 Replies

I’m just so frustrated! I’m going into my third year of PMR. This morning I called mail order prescription company to refill 5 mg tablets. They informed me that doctors office didn’t renew prescription as she had told me she would do when I saw her on Friday. I called my doctors office to see what the problem was. Nurse asked me why I wanted them n what was I taking them for! PMR was my answer but no response from her. Told her it was all in my chart. I’m so tired of having to go through this when I need a refill. What is happening to our medical system? I’m at a point that I just want to give up! I had a PET scan two weeks ago and it showed the PMR on the scan and it was mentioned in the report. Doesn’t that tell them something? Omg, so sorry I am ranting on so!

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MaryA_ profile image
MaryA_
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23 Replies

Not surprised you are fed up and angry. What total numpties they all are. At least its the beginning of the week..you got enough to tide you over?🌻

MaryA_ profile image
MaryA_ in reply to

I do, they prescribe the prednisone , than want you off it! Believe me that’s my goal too but after being on this cite I know it won’t be a two year affair, just want to go slow so I don’t have a relapse

Yellowbluebell profile image
Yellowbluebell in reply toMaryA_

You need to speak to your best gp and discuss your problems and that you want a slow taper. If you feel you cant resolve this with your current gp is there the possibility you can change practices? Are you seeing a rheumy if not is it possible to get a referral?

Don't worry about ranting we all do it at some stage. Keep us up to date on how you get on pleasex

MaryA_ profile image
MaryA_ in reply toYellowbluebell

My son just stopped by and saw how frustrated I was , he said the same thing. “Mom, change doctor office” Your right n he’s right! 🤦‍♀️ Thanks for listening

yogabonnie profile image
yogabonnie in reply toMaryA_

come to Minneapolis. Woodlake Clinic. problems solved!!

Thelmarina profile image
Thelmarina in reply toMaryA_

We do love our children - and sometimes they speak sense. This is far too important for you to be let down by incompetence. Go girl!

in reply toMaryA_

Exactly you need a sensible taper u the end. If you haven't got info then looked at the pinned posts and find a post of insight 329, the section on steroids and tapering. All these things convince your Dr you intent to come off eventually​ but too faster taper lead to relapse.

MaryA_ profile image
MaryA_ in reply to

Yes , I’ve been following the deadly slow tapering I saw on this cite I’ve been going down a half milligram a month I do a 5 week cycle

kulina profile image
kulina in reply toMaryA_

Only half mg works for me too. If I try to taper 1 mg I run into trouble. I tried to explain that to my doctor and he looks at me like I'm crazy. :)

PMRpro profile image
PMRproAmbassador in reply tokulina

Why must they be so sceptical? My body - I know it better than they ever will! Better to do at half the rate and get there I say...

kulina profile image
kulina in reply toPMRpro

Exactly! They are skeptical and they don't want to listen to anything new and different then what they already know. There's no creativity, they feel that one size fits all but we know that we are all different. Too bad, they are missing new learning opportunities. When he looks at me like I'm crazy, I just shrug my shoulders and keep going. At this point he's only there to keep prescribing the Pred. I've learned a lot more from this forum than all my doctors combined.

MaryA_ profile image
MaryA_ in reply tokulina

Yes, you’ve got that right. Tried to show them the 5 week deadly slow plan but they don’t seem interested

SheffieldJane profile image
SheffieldJane

How frustrating. Somebody in the system needs to wake up. It is dangerous to stop steroids altogether and suddenly. Time to make a written complaint I think. Rant all you like here. Something goes wrong with my prescription every month and the pharmacy is attached to the doctor’s surgery, each blames the other. I feel like I am begging, cap in hand for my pills.

MaryA_ profile image
MaryA_ in reply toSheffieldJane

It’s so sad, I don’t believe anyone on this cite want to be on the prednisone for years with all its side affects! I cannot imagine how I would have handled all of this without finding you all! Thanks for letting me vent! Maryanne

Yellowbluebell profile image
Yellowbluebell in reply toSheffieldJane

My surgery and chemist connected and blame each other on a regular basis. The only good point about them being in the same building is I can make a fuss in the surgery and the chemist can hear it and are usually running around like headless chickens try to resolve problem before I actually get to them!!

yogabonnie profile image
yogabonnie

I KNEW you were in the USA. it is INSANE. no one knows anything or shares information. It is all crazy. (except my doc is the exception..and he ALWAYS is on top of things) I am sorry this is happening to you. I especially like the nurse saying what are you taking them for after 3 years and your chart no doubt popped up in front of her on the computer. Good grief. VENT on RANT on. YOU should. OUR system sucks. And some people cannot even GET care.

MaryA_ profile image
MaryA_

I am in the good ole USA, Ha! On the east coast. I’m also dealing with metastatic breast ca. at the hospital, my doctors office is right there also. They all deal with the same computer system so I told them all, I wanted them all in the loop so everyone knew what was going on. Grrr

PMRpro profile image
PMRproAmbassador

You are at least in the USA where you can vote with your feet. They are incompetent - so should lose your custom.

Jackoh profile image
Jackoh

How frustrating!! Sometimes, I’ll amend that- so often they just don’t get it or want to!! As others have said vote with your feet!!

whitefishbay profile image
whitefishbay

Rant away. I had cardiac tests (3 tests three venues over 1.5 months). Never ever had the results. Letter, calls. Still don't know. I guess I am not going to drop dead. Sadly effects of Brexit taking it's toil on the wonderful NHS. I feel for you.

#NoOneCommunicates

MaryA_ profile image
MaryA_ in reply towhitefishbay

Same here too. A friend is having heart problems their office didn’t respond either.

Ciar profile image
Ciar

Having similar trouble! Today needed to fill my 5 mg prednisone and was not allowed as the bottle reads no refill until after August! Now I will have to spend time undoing this mess and fighting the system again. I’m about done with this doctor I’ve been fighting with for 2 years. She has never wanted to treat my PMR. Sorry to hear you are in the same boat. It just makes me so mad.

PMRpro profile image
PMRproAmbassador

Just remember to keep an eye on the use-by dates!!!

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