The too young saga continues

[Buttonshutton]

Hi. Seen rheumatologist again.

Asked how I am on her horrible taper of 2.5 a week. Said I can tell I'm stiff and aching again. she said I'm too young at 51 some grey areas for it to be PMR bla bla

I'm not too young !!!

Reduce further 2.5 week till I'm on 2.5 will see me in four weeks and see what bloods are today re inflammation. Etc

Then prob gonna do scan. I said what looking for im scared of lymphoma. Been googling. She said got to be careful what she says as could be doesn't think is really but it's a ruling out process because I don't fit PMR. I do !!!

I give in. She said steroids don't treat lymphoma so why did i feel better on higher then. It's consistent with its treating PMR sorely. And just cos some respond immediately and have no pain Why does that have to fit everyone. I shouldn't have needed 22.5. So had bloods to see inflammation levels again Amd I'm not to worry over lymphoma in the four weeks preceding next visit to her. Oh ok then !!!

[SheffieldJane]

This treatment is not informed or good enough. It has left you in pain and in an anxious state. As you say, this is a disease that hits people who are over 50 and you are not too young. As you are also aware a fast, steep taper leads to more pain and inflammation. Blood tests aren’t a good indication because the Pred does it’s job and banks it down. I managed to change Rheumatologists 6 years ago, with some grumbling from my GP ( I was being taken down a Fibromyalgia route that never reappeared at all later). I don’t know if this is feasible these days. Have the scan. What kind is it? Bearing in mind that Pred may have rendered the signs invisible. Seek another Rheumatologist if possible, an informed GP is better than a misguided Rheumatologist. Or can you challenge your existing Rheumie armed with information we have here on FAQs? It is a wise doctor that can continue to learn from their patients. Good luck! Sorry that this is so hard.

[Buttonshutton in reply to SheffieldJane]

Hi. Thank you Got home im in tears now. I did mention this group and some face book ones too. Sajd how I've learned loads through them and said everything you said. I mentioned lymphoma as was seeking reassurance really. Never expected it to be confirmation of the "other things". Other than my age I am completely text book PMR but im still not too young just cos not average etc. im going to go and see a different GP the one I saw initially has completely handed me over to the consultant at the hospital

[PMRpro Ambassador in reply to Buttonshutton]

"Other than my age" - doesn't apply either - "Over 50" is in all the guidelines thanks to lobbying by this charity. And good rheumies know that PMR doesn't wait for your 50th birthday to turn up to play anyway, they admit there are cases in their 40s, fwer, but still there. However - get that pred dose well down and take the PET/CT and hope it shows her to be wrong because it is the most definitive diagnostic tool for PMR.

[Buttonshutton in reply to PMRpro]

Thank you. It's really getting me down now

[Buttonshutton in reply to SheffieldJane]

Oh it's a PET/CT scan which led to my googling which let to my lymphoma thing. I'm terrified. But then she said I've had this 8 months now not lost weight o should be ill by now it was that. So hopefully not!

[SheffieldJane in reply to Buttonshutton]

She’s right, you would have many more signs by now. Be calm, everything will be alright and hopefully you will be treated appropriately. Let us know Buttonshutton.

[Sophiestree in reply to Buttonshutton]

If they have organised a PET/CT take it. That's how I was diagnosed as I did not tick the usual boxes. Then see what the consultant does from that. If they're still playing that stupid game of you being too young, I personally would get another rheumy. There's enough stress without having to deal with that on top. Hope the appt comes through quickly for you.

[Buttonshutton in reply to Sophiestree]

Thank you. Got another four weeks till I see her again. Why on Earth she isn't putting me in the queue for a scan now I have no idea. What's the point of waiting as I'll be on next to nothing pred wise in four weeks and I'm to stay on the 2.5 I'll have reached then. So it's just pro longing being able to go back up to sort the PMR once the scan proves that's what it is ? So sick of it as I know you all know about having felt the same at some point no doubt. Thank you for all the support on here. It's priceless

[PMRpro Ambassador in reply to Buttonshutton]

Don't want it - but I'd like to see her proved wrong like Prof D. Too much assurance of "I'm right ..." going on.

[Buttonshutton in reply to PMRpro]

Oh yes. Me too !!!

[suzy1959]

A PET scan was the only thing that made Rheumy sure I had PMR. Prof. Dasgupta ordered the scan because he was convinced I didn’t have PMR. He had to acknowledge that I did have it and that definite diagnosis has been very useful since as so many doctors have doubted it. It could therefore be very useful for you too! I was also considered too young at 52.

[Buttonshutton in reply to suzy1959]

Ah really. Thank you. That's really reassuring so you went through the frightening thoughts too

[PMRpro Ambassador in reply to Buttonshutton]

When you google PET-CT it tends to concentrate on cancers because that it what it has been and is used for in first line and they get priority because there aren't yet that many devices available - they cost a small fortune! It is relatively recent that they are used for other things.

[suzy1959]

I wasn’t aware of more frightening things, but I was convinced I had PMR and keen to get a diagnosis- it took two years!

[Sharitone]

Another 4 weeks getting stiffer? That's rather unkind! I hope it goes as well as possible and you at least get your diagnosis.

[Mamamia21]

I started at 48, am now 54 and they still have not decided that I have PMR because I was too young... They are still looking for axial spondyloarthritis but still no proof that it is that either. I am now on Methotrexate and steroids but to date the only medication that has stopped the pain I am in is Steriods. It is a horrid journey when Rheumy has other ideas... Good luck Buttonshutton I hope you get answers soon.

[Buttonshutton in reply to Mamamia21]

Thank you and everyone else so much. It's so frustrating isn't it

[PMRpro Ambassador in reply to Mamamia21]

Find another rheumy - even if it means once privately.

[Mamamia21 in reply to PMRpro]

This is my third and she pointed this out when I saw her... Going to hang in there for a little while longer to see what happens next. Due to see her again soon so hopeful that I can move forward now.

[PMRpro Ambassador in reply to Mamamia21]

Ah yes - and not so easy in Guernsey is it!

[Broseley]

How awful for you. This group is so supportive, please try not to worry too much though I know how hard that is. You have reassurance on here from others your age that you're likely to have PMR and from others about the scan. With any luck the scan will prove that you do have PMR and nothing else. Keep coming back and let us know how you're getting on.

[Nightingales]

Maybe you could direct her to the NHS PMR site where it states 50 plus. There is also a link to this site on there if she would care to take a look. I think it’s OK for her to be ruling out other causes, good practice in fact but the way she is dismissing your opinions is bad practice. Hope you get it sorted out soon.

[Charlieanna12]

Hi Buttonshutton,

I hope you're as well as you can be.

I was diagnosed with Lymphopenia last October and its been pretty awful. I have been isolating since then, it's been tough and made even more difficult when family don't understand my situation. I think they believe I am making it up.

Never mind them, how are you coping, are you having to isolate?

It can change/improve. My last blood test has shown that my total lymphocytes have gone up from 0 3 to 1.5.

But the bloods have shown a "Yo Yo" effect so I am never happy going out without a mask.

It can be overwhelming at times but with the correct, timely blood tests, and for me taking very strong antibiotics for the past year has kept me safe. I to Co- triamoxazole or Septrin but stopped them last week. In the beginning I suffered from Nausea but it did settle.

I hope I haven't scared you. I just wanted to reassure you that you can recover from Lymphopenia.

Good luck in your quest for answers, keep on at the Doctors for some positive information, it's in there. Take care, Christine

[Buttonshutton in reply to Charlieanna12]

Hi. Sorry not been on here over the christnas period. The scan showed it to be PMR after all. I’m sorry to hear of your condition and glad that you are improving. Must be frightening at times. Im much better than I was thank you. Currently experiencing a flare but know how to deal thanks to this group and a screen shot I took for quick reference in case it happened. The doctors pretty much leave me to it now it’s been confirmed which is a bit silly as they don’t check me for any possible pred effects on sugar levels. Two years on I am on 6.5mg (flare dose aside) from starting again at 20 after the scan. Thanks for asking and take care of yourself