Uninspiring Rheumatologist visit today: I did most... - PMRGCAuk

PMRGCAuk

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Uninspiring Rheumatologist visit today

3daysinjuly
3daysinjuly

I did most of the talking. NY is too far to travel so I am back with a lady Rheumatologist nearby who is very young. Asked for a bone scan; she said mostly that is for women. But I will get it. I don’t know...something is lacking in that field. Told me to reduce to 12.5. I’ll try that. Kind of thinking they are just throwing darts, get close maybe. Little bummed. Why go?

42 Replies
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That's how I feel "why go?"

Longtimer
Longtimer in reply to Hidden

I don't no point.......

Longtimer
Longtimer in reply to Hidden

I don't no point.......

I came out feeling like that 2 1/2 years ago and haven't been back since. My GP provides the meds and this forum provides the answers to questions. I listen to my body to know how it's doing.

PMRpro
PMRproAmbassador

I find this ignorance about loss of bone mineral density in men is rather worrying. There are apparently many men with poor BMD - and pred MAY make that even worse. The only way to know is...

Right. But it wasn’t just that. She walked in without my new lab work. I am the one who had to remind her about it. Then it seemed like a 10 minute countdown until I was shown the door. 10 damn minutes. One of the receptionists at the desk sensing I was not happy said, “oh, she had a lot of new patients today.” Cattle, we are more like, than patients.

PMRpro
PMRproAmbassador in reply to 3daysinjuly

The lady has cash register written all over her. Avoid...

Mike1964
Mike1964 in reply to 3daysinjuly

I share your pain! Have had 2 appointments with Rheumy, suspect both didn't amount to 10 minutes :-( But looking on the bright-side at least it wasn't his pain! :-) The very best of luck to you 3days.

3daysinjuly
3daysinjuly in reply to Mike1964

Thanks, Mike. How are you? Do you have PMR only?

Mike1964
Mike1964 in reply to 3daysinjuly

Yes (I think) I've had a horrible time, GP not very interested, rheumy very rude. I've been under terrible stress all year, wife seriously mentally unwell. I've also had (Still have) issues with jaw and ears, rheumy did put me on massive dose of Pred (60mg) in case it was GCA, no improvement so this was stopped. Some of my symptoms eased when I reduced to 12mg so perhaps some of it was actually side effects to the pred?

3daysinjuly
3daysinjuly in reply to Mike1964

I hope so. I had a gp visit today. I don’t think he knew very much about PMR. He said after reducing more on pred I could switch to nsaids. I believe that is impossible.

piglette
piglette in reply to 3daysinjuly

You are right, NSAIDs really do not touch PMR. It is always worrying when you realise a doctor has got it wrong.

3daysinjuly
3daysinjuly in reply to piglette

It is very worrying. Now if a rheum had said that it would be much worse.

Mike1964
Mike1964 in reply to 3daysinjuly

Ouch, sadly that doesn’t fill you with much confidence. Do you have to see your own GP? I’ve worked out that mine doesn’t work on a Friday so if I have serious issues to discuss that’s when I go! 🤓

PMRpro
PMRproAmbassador in reply to 3daysinjuly

Oh no we can't - they don't work well enough. And their potential side effects used regularly over years are as bad as pred IMHO.

Are we in the pantomime season or something? ;-)

3daysinjuly
3daysinjuly in reply to PMRpro

Unreal. I didn’t even want to embarrass him by telling him that. Sad.

PMRCanada
PMRCanada in reply to PMRpro

Agreed. I was on Naproxen (1000mg/day) for 5 months before I was diagnosed. Had a minimal impact.

Not a good experience for you! Some shockers out there! Waste of space that one!

Have a good look on this forum. Lots of very good experience, helpful advice & support.

Bit of fun too when we are up to it! ATB

I fully understand; After over 2 years, I still can't accept this so-called "new normal." And I have stopped going to the rheumatologist; My family Dr. will prescribe Prednisone ; I found rheumatologist visits a waste of time.

Not going for constant blood work or any more tests. There is so much error in scans and over interpretations; blood test errors are very common. One test leads to another and another; referral to referral; it becomes an entanglement that leaves you with no life.

It's interesting how many people are diagnosed after an injury or viral infection, or some triggering event.

Wonder why you want or feel you need a bone scan? Are you talking about a bone density scan, or a scan looking for masses or lesions? Bone density scans measure strength of bones and your likelihood of fracture; steroids can weaken the bones; that is why some doctors following patients on steroids order them; weakening of bones is more of a female risk after menopause because of drop in hormone levels. Maybe that is why your doctor said this.

Good luck; You are your own best doctor. We do not have to blindly follow.

I’m in NJ, too. Ocean County. Any luck finding anyone good?

I’ll have a bone density scan. I do know a few older guys with PMR who developed osteoporosis. Just wanna see how I’m doing. Might be the last thing I ask that office to do for me.

I would not go out of my way to recommend the two I have seen; I am in Gloucester Co. Healthgrades.com is a reasonably good way to find a doctor in any specialty; It's organized by location, specialty; gives a brief CV , but more importantly reviews by other patients with comments.

If you are not too far from Hammonton, there is a Dr.Marc Fisher who board certified rheumatologist/internist; is thorough, an older man, experienced, pleasant, doesn't rush, and is certified as a bone density specialist. But with these diseases, there are no magic bullets. I like Dr.Fisher, but realized that there was nothing he/or any doctor can do except monitor meds and blood work; anything else would be an emergency.

Good luck.

Thanks. I feel the same way. So damn confusing. Sometimes I feel like I might even have GCA, too, because my vision is off since PMR and pred. But they all seem to say no. I have had TMJ forever and that confuses things. And I have pulsatile tinnitus since suffering whiplash 5 months before PMR came on. I tried reducing from 15mg to 13.5 but morning wrist, elbow and hand stiffness has me re-thinking. I have seen 2 Rheumatologists here in Ocean. Both very ordinary and not a great help at all....or worse.

PMRpro
PMRproAmbassador in reply to 3daysinjuly

Pred can affect vision too - I spent a few years moving my computer specs up and down my nose to save getting a new prescription!

piglette
piglette in reply to PMRpro

I have often wondered about computer specs, I just have one set which I think must be for distance, I am short sighted and that is it. Do computer specs help? I take my specs off for reading, well I put them on my head.

PMRpro
PMRproAmbassador in reply to piglette

I'm very short-sighted and I tend to just take my specs off to read. But I can't really see the computer screen without although the keyboard is just about OK. So my optician made something inbetween for using the computer and they really help. They are JUST enough to watch TV on a biggish screen TV or a computer next to me while I'm online at the same time. They are dirt cheap small frames with the cheapest lenses.

piglette
piglette in reply to PMRpro

Perhaps I should try them, I sometimes have to take mine off to look at the computer screen. I have got a new desk top computer and the type face seems to have decreased in size from my old one, goodness knows how you get it bigger. Probably can’t.

PMRpro
PMRproAmbassador in reply to piglette

wikihow.com/Change-Font-Siz... ????

When they messed up patient for the first time and the font was suddenly much bigger I just typed the question into google...

piglette
piglette in reply to PMRpro

I did all that, it is still much smaller. I was using Windows 2000 before though.

PMRpro
PMRproAmbassador in reply to piglette

I got different instructions then - can't remember what they were though!!!!

piglette
piglette in reply to PMRpro

It did make it bigger but not as big as before. I found Word was not as good either. I think that if they find bugs they just cancel anything to do with that bit of the program. They just offer a load of things I can never imagine ever using.

PMRpro
PMRproAmbassador in reply to piglette

Have you got the three vertical dots at the top right of the page? Customise Google Chrome? That lets you zoom up and down from 100%.

piglette
piglette in reply to PMRpro

Thanks so much, I don’t use Google Chrome, I use Firefox. I do not use my PC desktop that much so will revert to good old Apple! I don’t need my specs for that. Problem solved, but I may try computer glasses for the desktop, I get my specs on-line at a reasonable cost.

If you are having visual problems, do see a good ophthalmologist; PMR and GCA often go together and GCA can cause sudden blindness; I temporarily lost vision in one eye; luckily it returned in a few minutes; I was tapering prednisone at the time; I increased my Prednisone immediately. I too have tinnitus for the last 9 months; very annoying; although it can be a also a side effect of prednisone and other meds too; there are ophthalmologists in Philadelphia with experience in GCA.

So sorry about the stress because it's the last thing you need with this condition. Both U.of Penn and Johns Hopkins in Baltimore have vasculitis departments; however, I would see an ophthalmologist sooner rather than later. Good luck and hope you feel better.

PS. Unless you have a temporal artery biopsy, there is no basis to say you don't have GCA; unfortunately, many of those biopsies are incorrect, and unless the biopsy was performed before you have been on prednisone for more than 3 weeks or less, it is useless . Many false positives and negatives.

I think you have to use your own judgment on prednisone dose.

Thanks for the info. There is also an ultrasound that they use and, I believe, they look for a halo. But my rheum does not do it. She said it is not a simple thing. She said Robert Wood Johnson in New Brunswick knows how to do it.

Do you have any names of the eye doctors in Philadelphia with GCA knowledge?

PMRpro
PMRproAmbassador in reply to 3daysinjuly

If I were looking for a rheumatologist to deal with GCA in Philadelphia I would ask this guy

acr.confex.com/acr/2018/mee...

He is a brilliant rheumatologist - sometimes maybe a bit direct but very good.

3daysinjuly
3daysinjuly in reply to PMRpro

Thanks. No openings with any member there until May. I wanted to speak with someone other than the Rheumatologists that I have been seeing but no luck getting in there.

Have to ask this! Such an interesting name. Can you tell us about the 3daysinjuly or is it private?

But, sadly, since this PMR came about, I have lost interest in one of my greatest joys. It scares me.

On July 1,2,3, 1863, the greatest battle of the American Civil War took place at Gettysburg, Pennsylvania. I am a Ciivil War historian....some say Civil War nut.

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