Covered in confusion!: I have just seen my... - PMRGCAuk

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Covered in confusion!

Wilts-girl
Wilts-girl

I have just seen my rheumatologist this morning and have come home feeling confused and depressed. I haven’t posted for a long time because I have been jogging along quite well following DL’s tapering plan. I got down to 6mg a few months ago and then had some stiffness in upper back and shoulders. I mentioned it to my GP and he said to go back up to 7mg for a while. He is an excellent GP and did a specialism in rheumatology during his training. I am now tapering down and am nearly at 6mg again. However, rheumatologist is not happy! She is obsessed with getting me to 5mg asap and says she will have to consider adding in other medication if I don’t get there soon because of side effects of Pred. Leflunomide didn’t work for me and I refused Methotrexate so I don’t know what she is considering. I had also asked to have a DEXA scan instead of my infusion of Zolendronic Acid. I asked for this because by strange coincidence my husband also has PMR but only in his shoulders. When he requested a repeat Px recently a GP rang him and asked how long had he been on Pred and did he know about side effects etc. She then said she wanted him to have a DEXA scan. His results showed that his bones are excellent. Rheumatologist says however that this could be a false positive result because he is male and nearly 75! She says he probably has some osteo arthritis causing this result. She will not give me a scan for another year and I must have third infusion. She is apparently an expert in osteoporosis she told me today. She has a Ph.D in it and is leading expert in our county! I am sorry for this long rant but I thought I was doing well but It doesn’t seem good enough for her! P.S. I was diagnosed with PMR in May 2015 so according to rheumatologist that is a year too long!

11 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

If I were you I’d stick with GP - more sensible.

Your Rheumy is obviously not aware of this -

rheumnow.com/video/dr-kathr...

Why add in another drug with potential side effects when you are below the equivalent that body produces naturally. At 5mg and below you are getting very little in adverse side effects, so why rock the boat?

Guess she’s not read this either -

practicalpainmanagement.com...

PMRpro
PMRproAmbassador

Good for her - but she is WRONG on a few items. Not least how long PMR lasts and whether there is any point in adding in another drug when the patient is already well into the physiological range of pred dose. At this level the side effects of pred are negligible except possibly for cataracts:

practicalpainmanagement.com...

She also sounds totally arrogant - real leading experts don't act like that.

As DL says - get the GP on side. Or switch to your husband's GP who sounds totally with it.

Nice on the “real” experts don’t act like that.

Have you ever had a DXA scan? I noted a significant difference within one year and I was only using natural means to improve my bone density. Now I'm not eligible for another for three years, but they did do two consecutive ones one year apart after the diagnosis of low bone mass. I think it's really important to know if your medication or other protocol is having the desired effect. And, regarding your pred taper, as we often say, it isn't slow if it works. The rheumatologist's ideas are likely to cause you to have a flare which will mean you end up taking more pred, not less. What you've been doing has been working, so why try to fix something which isn't broken? Sometimes I think the experts feel they have to do something to justify their existence, when often the best action is to carry on as usual.

Some doctors and Rheumies tend to stick to text book information. Too many of them tell you PMR lasts only 2 years and if you still have symptoms after that then it is something else, not PMR. This has been proved false again and again. Just ask those of us who have had it 10 years and more! After I began attending a gymn again and found that I was near collapse after only 20 minutes of light exercise walking on a treadmill and a recumbent cycle the trainer told me to get a letter from my GP confirming that I have PMR and they would give me up to 6 months of non-payment on my premium. He refused point blank and bluntly told me, 70 years old at the time, to go the gymn every day and "really push yourself!" So, many of them just haven't got a clue. Could you possibly pay privately for a DEXA scan? I don't know where you live,but you can get it in London for around £65 and it is worth every penny for peace of mind. I refused "bone protecting" drugs, and upped my dietary calcium, take VT D in autumn and winter months and my bones are fine, after 9.5 years of Pred. Now on hydrocortisone.

Dorset Lady has, as usual, said all you need to know. Your body so your decision, you could remind the rheumy of this. You have a good GP look after him. Good luck.

Just read comment that a good DXA scan interpreter will note osteoarthritis when interpreting the scan. I believe that men and women are measured against standards based on their own gender? If not, then it means all women are being measured against an impossible standard, that of the bone density of a healthy young Caucasian male.

It’s like the colonoscopy prep. A 90 pound woman has to drink the same amount as a 300 pound man. Ugh! And my hernia repair...”don’t lift any more than 30 pounds.” How about 5 pounds?

I'm going to shorten my pet rant as much as I can but it's your body and you have a right to say what happens to it. Don't be bullied, say no and if in doubt find another doctor!!! There, that's as short as I can make it. Be strong.

Hi Wilt-girl

Sorry to learn that you have been diagnosed with this miserable condition. I know it is very confusing and depressing at times. You have come to the right place. There is loads of info here. So, just read and read some more. Especially read about the slow was of decreasing that is talked about here. I really do think it is the answer. Sorry to hear your dr. is in such a hurry. My dr. is also of the persuasion that this only lasts around 2 years. However, I haven't had any problem with her in getting the amount of prednisone when I need it. I have been diagnosed since 10/16 and think I had it long before that and went undiagnosed.

I am really, really taking my time decreasing the dose this time around. On 15 mg pred. I am decreasing 1 mg each month, as tolerated. If that doesn't work then I will decrease by 1/2mg each month. I Was on Methotrexate but that didn't help with the tapering one little bit. Glad to be off of that.

Good Luck and try to not get depressed or anxious, it just doesn't help.

Take Care

Lin

Would just concur with everyone else. I'm on leflunomide but went on that at 21mg . It seems ridiculous to be considering it at 6/7mg. As has always been said on here going down on the steroids isn't a race we need to listen to our own bodies ( note to self!!) Your GP sounds as if he is sensitive to what is going on. Your rheumatologist sounds as if she has a plan come hell or high water and you have to fit in regardless . You've got a lot of personal experience, your GP is very supportive. I would tend to work with him and my own body.

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