Rheumy appointment: Saw Rheumy this morning - came... - PMRGCAuk

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Rheumy appointment

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Saw Rheumy this morning - came away disappointed and annoyed. Usual statements made - been on steroids over a year / currently on 16mg, only give 15 mg for pmr / need to get off them / side effects blah blah blah!! Told rheumy shoulder pain back now reduced to 16 mg. Reply - need to reduce to 15 mg. Tried to argue point to no avail. Keeps on about wear & tear, I explain this is pmr pain, completely different from physical pain. I did get referral for dexa scan (result).! I'm going to try injections in shoulders she suggested. She had me moving(well attempting) arms raised etc. Came home worse state than when I went out! Also requested I have hip x ray and new bloods taken. To add insult to injury they couldn't get blood sample from either arm, so off to book nurse appt at drs. Rheumy definately wants me off steroids and try alternative meds. I told her I couldn't go back to pre diagnosis where it was painful to lay in bed, could hardly walk anywhere and barely function. No comment from rheumy.

Still, it was lovely sunny day so went off for coffee and lunch, determined not to let the b*****ds grind me down.

68 Replies
oldestnewest

Greetings tansy

Unfortunately, this seems to be a regular complaint about (some) GPs who are fixated on getting their patients off of the Preds - without seeing the bigger picture / taking their context into account.

If it helps: I had a similar experience with a temporary, very dogmatic Junior GP along the same lines last year. So, armed with knowledge from this forum and some relevant research data I wrote a letter of complaint to the Practice Manager about my unhappy experience. And, Hey Presto, soon followed an appointment with a Senior GP who was much more understanding and flexible in his approach.

All I can say is: keep pushing for what you need, and why you need it if you have a bad experience with your current GP or Rheumy. And.. try to keep detailed records of what you asked for / what the replies were in your GP consultations. As they say, 'The Devil is in the Detail..' if things become more formal in terms of the GP / Patient relationship ;-)

Please keep us posted on your progress. And, Yep, enjoy the relaxing sunshine - it helps to de-stress!

Best wishes

'Uncle' MB :-)

Hidden
Hidden in reply to markbenjamin57

Thank you for your comments MB . Saw her locum last time - much more understanding chap. Have also requested copy of alll correspondence . Yes, need to make notes of appts for future use.

markbenjamin57
markbenjamin57 in reply to Hidden

All part of the service tansy, hope things go better for you with your next appointment :-)

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Sorry to hear about your appointment- why does everything have to be so difficult! Anybody would think we, the patient, likes being in Pred!

Totally agree with your last sentence - someone after my own heart!

Hidden
Hidden in reply to DorsetLady

Thank you Dorset Lady. They certainly cause us more stress. I also tried to tell her how fit I was a few years ago - I ran outdoor plant dept. I was on my feet 8 hrs a day, must have walked miles around site each day. Total physical workout carrying, bending, stretching,pushing and pulling plants around. Think I'm in good position to know types of pain and my own body. Definately nothing like pmr pain ever experienced!!

I told my rheumy that I could sue for the consequences of untreated inflammation (GCA, cardiopulmonary damage, torn Achilles tendons etc. etc) just as easily as I could sue for the negative side effects of pred, and that while untreated inflammation consequences couldn't be undone, the side effects of pred could be controlled with proper supplementation.

After that, she stopped fighting me.

Mstiles
Mstiles in reply to GOOD_GRIEF

Wow, you are one tough cookie. Wish I could have done this with my rheumy who fired me for not following his orders. Good for you.

GOOD_GRIEF
GOOD_GRIEF in reply to Mstiles

I'm a New Yorker. I think it's something in the water.

Chrob
Chrob in reply to GOOD_GRIEF

Whenever I feel I need to be ,shall we say firm , I put what I call my New York head on .

Hidden
Hidden in reply to GOOD_GRIEF

Hahahahahaha! It's in all American water and although off putting and offensive some of the time... it does come in handy!

PS - I'm from Boston area!

ConventCassie
ConventCassie in reply to Hidden

Are you still in the Boston area?

Hidden
Hidden in reply to ConventCassie

No I live in England now... My husband is British and we moved here 9 years ago. We Live in the South East, in Brighton and I love it! I would not move to the USA; especially with the current political climate. Where are you?

ConventCassie
ConventCassie in reply to Hidden

Boston. Say, how did you get that picture of the book on your page? I’m reading “The Autoimmune SOLUTION (2015) copyright Amy Meyers, and not liking the solution, but I think she’s spot on. Since I joined these online groups I’m amazed at the number of different autoimmune disorders one person has. And I keep thinking it’s an epidemic (as does she) when you see how many new people join these groups weekly.

Ironically, I’m in the Brighton area of Boston (by BC & the Reservoir). Right now not too pleased with the political situation in the US, England, or France!

Hidden
Hidden in reply to ConventCassie

Oh that's funny... Brighton, Ma! I lived in Worcester for 22 years before moving to Florida... was there for about 30 years and then moved here.

The picture of the book.. I went to Google, typed in name of book, went to images and found the photo of the book cover. I saved it to my computer and then uploaded it to the post. Does that make sense?

Yes I joined some Facebook PMR/GCA groups and everyday the Admin welcomes 4, 5, 6 new members!!!! WTF?

ConventCassie
ConventCassie in reply to Hidden

I’ll see if that works on the iPhone. Thanks

Hidden
Hidden in reply to GOOD_GRIEF

Well done GOOD GRIEF. Some of them could do with a good kick up the backside - and removal of the patronising talk they give us. We're intelligent people and should be given respect for managing a very difficult illness.

GOOD_GRIEF
GOOD_GRIEF in reply to Hidden

I just think that people deserve respect. Period.

The only bedside manner I want from the medical community is to listen to what I have to say and respond by giving me information. Sympathy and empathy are nice, but not necessary. I'm coming to them for information and expertise.

Ultimately, I'm the one who makes the decisions, not the doctor.

Hidden
Hidden in reply to GOOD_GRIEF

ABSOLUTELY! You are 100% correct!

4840
4840 in reply to Hidden

Yes, well said!

Wow! Go you!

Ohhhhh, Good_Grief, that was GOOD! Really good!

Hi,

I think we are in similar place. I’ve been on prednisone for a year and now am at 15. Like you the pain in my shoulders can be horrible. I as well am frightened to experience the level of pain prior to prednisone.

However I find the side effects of prednisone almost as frightening. After a year I’ve gained 30 pounds and my immune system is compromised. Calcium low too.

I was recently discharged from the hospital due to UTI, strep throat and the norovirus which my daughter I got from a bridal fair. She was in emergency for a day to receive fluids while I was admitted for 4 days.

That’s not the end of the story. My recent hospitalization was due to the fact my body can’t shed the norovirus due to the compromised immune system. So the recent visit was round 2. I wouldn’t wish the norovirus on my enemy. When I finally got to ER my blood pressure was 60 over 41. They believed my heart was failing and confirmed kidneys were in failure. Thanks to a wonderful ER nurse who gave me 5 liters of fluids in a hour and a half (two IVs and manual pumping) she was able to bring my blood pressure up and stabilize my heart.

So, after hearing other stories and my personal experience I am in agreement with the docs. Best to get off the prednisone. I am willing to try any other medications. I need to be healthy and strong. I only have 4 grandchildren and have my heart set on seeing a few more.

That’s much better than being the ER story of the month at the hospital. The young lady wheeling me out (volunteer) just went on and on about how my trip to the ER is the news of the week at the hospital. I am glad she can report I went home alive. The hospital should be proud of the great job they did. They were fantastic.

So don’t be too hard on the docs who want you off prednisone. They too probably have stories similar or worse than mine. It’s a different perspective.

Remember there are side effects from prednisone that you don’t feel or recognize until you do.

Wishing you a full recovery.

TJ. Sorry for long post.

Hidden
Hidden in reply to Tj2017

Wow, you certainly went through the wars! I recognise side effects of pred not good (my sugar levels have raised - type 2 diabetic, previously controlled by diet alone prior pmr) but am trying to reach happy medium whilst slowly reducing. Just want medics to listen and show some empathy. Hope you've no lasting damage after your ordeal.

SheffieldJane
SheffieldJane in reply to Tj2017

What a survivor you are Tj it sounds terrifying. From a Bridal Fair of all places. Very glad that you have made a full recovery. Don’t rush getting off the steroids, you’ll just end up back at the beginning. Your experience was incredibly bad luck.

Tj2017
Tj2017 in reply to SheffieldJane

Thanks Jane for referring to me as a survivor. I admit I have been feeling sorry and scared for myself. I went to my doc for a hospital follow up and he said the same thing. He said I should feel good that my heart performed so well with such a low fluid level. Still recovering though Heart rate was 124 so my hubby is taking me to get blood work this morning.

I sent an email to my rhuemy yesterday afternoon to let her know what happened and that the PMR pain has gotten worse. This morning my hips are killing me. I had to keep turning all night due to the pain. I stopped dropping so we will see what she says. If only I could get my cat to stop sleeping on me that would help. I am not ready to increase my prednisone yet. When I was in the hospital they put me on the stress level protocol for patients on steroids. For about a day and a half I had relief from the pmr pain. Unfortunately after each dose I had the tremors and red face.

Anyway, thanks again.

Best,

TJ

Hidden
Hidden in reply to Tj2017

I agree the docs do know what they're doing. My husband's specialist obviously knows all the side effects of pred and prescribed more meds to counteract them ie calcium tabs etc. He's just finished with the streoids BUT he's STILL on the methotrexate the side effects of which worry me more than the pred. It's already caused a blood clot which has caused oedema so is taking more medication for that. He had to stop taking it for a while as it caused his liver function to drop. Once that was back to normal and went back on it the blood clot appeared. Have read up about alternative meds to methotrexate but all seem to carry the same risks. Beginning to wonder if he's better off suffering the PMR .... he's like a mobile pharmacy at the moment!

Tj2017
Tj2017 in reply to Hidden

Hi Laura,

Thanks for your reply. I should clarify I am willing to try other medication except methotrexate. I refused to take it due to the side effects. My husband was adamant. There is little evidence here in the US that methotrexate is effective for PMR. It is unfortunately one of the few choices of meds available for rhuemys.

Fortunately Actermra was approved in the US for GCA and I was on it for 4 months with prednisone going from 70 down to 50. My cholesterol went through the roof and I was pretty much incapacitated. I slept 16 to 18 hours a day. I finally went to a immunologist specialist. She said I was being over medicated. She ran several test, ct scans, ultrasound and confirmed the GCA was not active. She stopped the Actermra and had me start dropping prednisone. Within 3 weeks I was up and about again. Not 100 percent. Still not 100 percent.

PMR is so poorly understood and there doesn’t seem to be a magic pill available. Even after the Actermra I suffer the PMR pain. GCA headaches went away. I feel for your husband and glad he’s off prednisone. I would talk to the physician to try to reduce the methotrexate if you can.

I wish him a full recovery.

TJ

Hidden
Hidden in reply to Tj2017

I agree. Many people have said don't use methotrexate and this is why I want an alternative for hubby. He actually told me he has reduced the dosage himself (ssshhh) and is managing ok at the moment. The swollen leg is his only point of pain just now.

The medication for PMR does seem all a bit experimental and effects different people in different ways I guess. So sad to see my fit strong hubby deteriorate like this.

Thanks for advice ... much appreciated. Wish you well too

piglette
piglette in reply to Hidden

Dear Laura

I am not sure that the main medication for PMR is experimental. It is steroids and has been for many years. It seems some doctors are totally unaware of how steroids work and also how to treat PMR, but that does not make PMR medication experimental, just doctors who do not know the illness.

PMRpro
PMRproAmbassador in reply to Hidden

But mtx DOESN'T replace pred for PMR - it may let you manage on a slightly lower dose of pred (no guarantees either).

Whatever the problems of pred, they are all known and actually far easier to manage than people (even doctors) think. The fear of pred is not really justified. And the use of pred for PMR is established - not experiemental at all. Tapering may be...

PMRpro
PMRproAmbassador in reply to Tj2017

"Best to get off the prednisone"

No, I have to disagree.

There ARE no alternative medications for managing PMR except Actemra and even that is to be used in tandem with pred at the start. The immunosuppressive aspect is a greater concern with Actemra in any case.

The side effects of pred CAN be managed when you know how and weight gain is NOT inevitable - cutting carbs drastically does make a significant difference and there are plenty of people on the forum who back me up. That also reduces the risk of developing steroid-induced diabetes.

If you have PMR then leaving it unmanaged does increase the risk of developing GCA - and without pred you run the risk of loss of vision. Unmanaged PMR results in loss of mobility and constant pain - leading to all sorts of other effects, depression and so on.

Hidden
Hidden in reply to PMRpro

Blimey...... so many conflicting views. His specialist says the ultimate goal is to be off the steroids, due to the side effects which CAN be extremely dangerous, and be able to get the amount of methotrexate correct to manage the pain of the PMR, which also CAN cause side effects ... one of which he already has .... a blood clot. Urgh😩

Hidden
Hidden in reply to Hidden

Maybe it's his specialist he needs to change with hopefully no side effects 😃

PMRpro
PMRproAmbassador in reply to Hidden

What tosh. mtx does NOT manage PMR pain, if it did they would use it all the time.

medpagetoday.com/rheumatolo...

rheumatology.org/Portals/0/...

Recommendation 7 discusses the use of mtx and this is the considered opinion based on evidence of some of the top experts in PMR. The first link discusses the results of recent study from the Mayo clinic and one of those experts showing that pred as used for PMR is NOT "extremely dangerous".

As laura suggests - I think I would be changing my specialist...

Hidden
Hidden in reply to PMRpro

Ok just told hubby and he said so how come he's now on just 1mg of pred per day (and finishes next week )but 15mg of mtx per week and he's pain free ?

HeronNS
HeronNS in reply to Hidden

That could indicate a number of things. One is that his PMR is in genuine remission and he needs NO medication for it any more. Or it could be late onset rheumatoid arthritis which is usually treated successfully with methotrexate.

Hidden
Hidden in reply to HeronNS

Ah that could be it he's in remission. ( maybe just temporary?) It's definately early onset pmr. They took an awful lot of tests to reach that conclusion. Thankyou. So hoping that his specialist says just that .... he's in remission. Just the dvt to get sorted then 😩

HeronNS
HeronNS in reply to Hidden

I should have said the ultimate goal isn't to get off the pred. If PMR is still active, the ultimate goal is to find the smallest dose which controls the symptoms. It can be a very low dose. One does not come off pred if one has PMR until the disease is no longer active. I do hope your husband is truly in remission, that would be great.

Hidden
Hidden in reply to HeronNS

Thanks very much ... that all makes perfect sense. And yes let's hope so .. fingers crossed

Spot on Heron - whether at 20 mgpd or 2 mgpd.

PMRpro
PMRproAmbassador in reply to Hidden

Because everyone is different...

Hidden
Hidden in reply to PMRpro

Yep

Hidden
Hidden in reply to PMRpro

Thank you pmrpro for your comments. As I thought so called 'better' alternatives can be worse than pred side effects. Only side effect I seem to have is raised sugar levels (I'm type 2 diabetic) but new injection of Trulicity (god, who makes up these names)! seems to be reducing carb and any other food cravings. Didn't say anythiing to rheumy when she suggested it as I shall make notes and be prepared for next appt on alternatives she may offer. As I said in previous post, rheumy very good, according to friend - but that's RA not pmr and we've all got different problems on how pmr attacks our individual immune systems.

Hidden
Hidden in reply to PMRpro

Oops replied to myself! Maybe it's his specialist he needs to change..... with hopefully no side effects 😃

Well the tests are all useful in case anything else lurks. It is a long time since I heard about such a steroid averse Rheumatologist . I thought the message was getting through. It is perfectly possible that you’ve never absorbed enough Prednisalone to control the inflammation. It can really vary from individual to individual and yet some doctors insist upon making patients feel guilty, to blame and unhappy. Glad you are having a DEXA scan. I really hope the injections do the trick. Some people swear by them.

Good that you were able to keep calm and enjoy your sunny day, coffee and lunch. I think we’ll all start to feel better now the better weather is here.

Hidden
Hidden in reply to SheffieldJane

Thank you sheffield jane. Never occured to me that pred may not be fully absorbed. No way of telling I suppose. Had bad fall few weeks ago and not felt well since - fell over cat scratching board, badly bruising knees . Also hurt ribs, can't believe my DD boobs didn't cushion them! TMI, haha! Another sunny day, max 25 predicted, even in North yorkshire. A day of chilling out and blow any housework. Everyone have fun in the sun.

SheffieldJane
SheffieldJane in reply to Hidden

An accident like you had sets you back so much.

medpagetoday.com/rheumatolo...

I think Good_Grief’s warning on the dangers of untreated PMR in conjunction with a copy of the recent report that the side effects associated to Pred aren’t as bad as originally thought, might be a nice liitle argument.

Hidden
Hidden in reply to Insight329

Good thinking Insight.

Hidden
Hidden in reply to Insight329

YES! I am living proof that untreated PMR leads to far worse consequences! : (

Hidden
Hidden

First of all it's a path we all seem to have and until they treat the whole person effectively it will continue so. Each new pain requires attention if it doesn't go away fairly quickly.

There are always horror stories of unwanted effects with drugs and it's bad as it's a lottery. I have no problems with taking pred decision wise. The unwanted effects of pred like all drugs effects different people in different ways. All you can do is gather info and react accordingly. If you know a drug effects calcium then take calcium ...if you need calcium best take D3 to allow body to absorb it more effectively. Etc. My sister can't take codeine I have no probs whatsoever.

Get those fluids in before blood test and perhaps have a couple of carb free days pre blood tests. I have a stroll around to get blood pumping. I have type2 and if I don't hydrate it's like a stab in the dark.

Insight329
Insight329 in reply to Hidden

Totally agree. Learn the side effects of the drug and then do what you can to minimize them. Same with diseases/disorders: learn then take action.

Hidden
Hidden in reply to Hidden

Thanks poopadoop. I usually drink lots of water pre blood test but rushed (that's pmr rate rushing) but took so long getting dressed I forgot. Will also try some carb free days prior, also. The Trulicity injections seem to be suppressing my carb craving too. Only had 2 so far so hope it isn't this causing extra pain. Hopefully I will get out of this catch 22 situation. It's ironic that rheumy going on about side effects of pred , her locum quite willing to prescribe AA without dexa scan! Only when collecting prescription andI reading about AA I refused to take it. I do take Accrete D3 twicee a day. I don't pay for my prescription but even if you do some medication highly subsidised. Waste of money if not required.

Hidden
Hidden in reply to Hidden

I haven't noticed increased pain on trulicity. I think it does help with carbs. I haven't noticed any increased pain etc so far and over 12 months in now.

It is amazing how prescribing is a hit and miss affair.

The one thing that might be happening us the trulicity might be making you feel a bit better as blood glucose gets more controlled and you might be doing more without realising. When I was put on insulin I wasn't quite so blurgh and did a bit more.

I have been off the pred for 6 months and although some days the pain in my shoulders is unbearable I will put up with it. I cannot go back on the steroids, I cannot believe how much better I feel without them. No constant tears, no mood swings and no fluid in my legs.

I declined the Methotrexate whilst on the steroids as my rhuemmy wanted me to take them as well as the pred. He wanted weekly bloods etc I wanted off pred not another drug alongside my 2 mg per day (reducing after 2 years)

After a bit of research I spoke with my GP and decided not to be an experiment and threw away the prescription.

I am not saying what I am doing is right, however the rheummy wishes for me to take a combination of drugs, my gp wanted me off steroids due to the side effects, who I have not seen since October. It seems to me that nobody knows a bloody thing.

Insight329
Insight329 in reply to Suziib

Feeling like the rope in a tug-of-war, Suziib?

Suziib
Suziib in reply to Insight329

Definitely.. that must be the cause of the pain in my shoulders... 😂

Hidden
Hidden in reply to Suziib

😂😂😂😂

Hidden
Hidden in reply to Suziib

Good on you Suziib, We all have to make decision that are right only for US! You did the right thing if you were not comfortable after giving Methotrexate that appropriate consideration!

Hidden
Hidden

Dear tansy13, I am so sorry your Rheumy experience was so very different than mine... I have only been on steroid for 5 months, but it has been 5 months of ridiculously high doses; my Rheumy does not seem concerned (yet) with the Pred intake, but more with how I am feeling and achieving a successful taper down.

I cant imagine how frustrated and deflated you must feel. Does she not understand it is Quality of Life issue. Maybe if you approach it as a "mental health" issue she will have to listen? Just a thought...

Good luck, I hope things turn around for you... Hang in there! We got your back.

xx

Hidden
Hidden in reply to Hidden

Thank you mamaici. My 16mg is nothing compared to very high doses many of you are taking. Definately quality of life prefered to days of pain and some side effects. I'm probably already written up in notes as having a few issues!

Hidden
Hidden in reply to Hidden

Make them take you seriously! I am filled with so much anger and regret that I allowed my GP to convince me my PMR aches and pains were "normal," for a "women my age!" Bullshit! It was PMR and 18+ moths later it morphed into GCA!!!! Make them listen, don't be afraid of offending them!

New rheumy time or 2nd opinion...stories like this is why I’m holding off even going to a “rheumy”...

Just awful when you feel no one is really listening or taking you seriously and that they have just got their own agenda. It may be ( I think Sheffieldjane mentioned this - can't remember if it's this post!) that you are not absorbing all the pred and that's why you've found it hard to reduce??I certainly think this is the case with me and I am still on 17 mg ( after a flare caused by cold virus) and have not been lower than 16 mg for about 18 months. My Rheumy is very understanding and we have been working at reducing at 1mg a month and I have been taking Leflounomide as a steroid sparer. So daworm not all Rheumy are the same but maybe tansey13 you might have to look for another Rheumy? This one appears to have her own agenda.

Hidden
Hidden in reply to Jackoh

HI Jackoh. Out in the sun today I met a friend who has same rheumy as me. Asked her opinion of rheumy and she was very pleased with her. Friend does have RA. though, so perhaps not so experienced in pmr Thank gpodness you're not nagged by your rheumy on your dosage Sounds like a good person. It's not as if we want to be taking all these meds. Might have to find new rheumy - if I have to travel, so be it - not as if we see them that often.

Yes true tansey13. I travel about 2and half hours to see mine.

I'm just finding this thread, not sure if somewhere in it there's been a suggestion that your returning pain may be caused by something other than PMR? I know when I was in my early highest dose of pred (and I suspect I absorb it well so probably better off than many are) ALL my aches and pains went away, including very bad hip pain caused by back problems. I've had an osteoarthritis diagnosis for many years and I can honestly say that all those pains went away too. As I reduced they came back, and a physiotherapist has helped a great deal. Long term pred appears to have weakened my muscles and made me very prone to injury, in my upper arms so far, but I cope, and I know that will get better once I'm able to come off pred completely sometime in the future. But I would never increase pred dose unless I was sure it was PMR pain I was dealing with. I'd find another way to deal with other pains.

Hidden
Hidden in reply to HeronNS

Thank you HeronNS. Yesterday received appts for dexa scan and injections for shoulders in early May. Hopefully good news awaits. Also had x ray of hips last week, to check wear and tear. Previously on 15mg, rising to 20 when I had a big flare up and it really knocked me for six, decreasing has been awful. Last few months been very stressful, also not helpful. We all know we shouldn't but it's easy to overdo things when we get a small increase in energy. Last few days of hot weather and sunshine have been great - bit of pottering in garden and a lot of relaxing with a book in chair. |Great! All change next week - wet and windy.

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