Update on the Downdate.

[fren]

Delightful appointment with my GP.

He was stunned by my collapsed discs and the osteoarthritis, offered to prescribe a shopping trolley, but thought a Dopler scan of large blood vessels in legs may be more use. So off to Dopler tomorrow, (arteritis /vasculitis limiting my walking ability?), Opthalmologist on Thursday (annual checkup) and back to him on Friday. He is not impressed with recent communication from Rheumy who it seems was annoyed that I had upped the pred myself in January. She wants me off Pred, He says 'no way'. I think he plans to find me someone who knows about PMR, or help me find someone. Told me to take whatever Pred I feel I need until we get the CRP back down, and not to go making a Rheumy Apt until we have talked. Also started on Orocal, and my anaemia is going to be investigated.

So there it is, I plan to stay on my current 6 1/2mg dose until friday if I can cope and then I will be asking for advice from all you amazing and caring people.

Thanks Fren

[Hidden]

Hope dopler goes well. Glad you had the support from Dr. Treat the symptoms is the mantra. Is crp "normal" you are on right dose as I understand it.

[fren in reply to Hidden]

hi Poopadoop;

CRP at Jan Flare up from 2 to 5.2 after being below 5 for 6 months. (below 5 is the normal here)

CRP last week 25, higher than when I first started on this journey (24) and before I started the pred.

Sed rate 33, normal here is below 20.

I admit to feeling pretty rough, but I am so lucky to have my daughter to take the strain for me, and hopefully it won't be long before I can reciprocate. At least we make each other laugh.

Thank you so much for your kind interest, Fren.

Bye the way Vet for Pred dog on Thurs as well. He is stunning.

[Hidden in reply to fren]

It sounds like the markers are creeping up slowly so once scan etc done perhaps another mg or 2 might stabilise you.

Don't know if I have said this to you but when I couldn't walk properly due to bulging discs and arthritis and just came to a stop I would try a step or two backwards using the side that freezes up.more. somehow it worked. I got funny looks but after 10 steps backwards I could slowly start walking again.

What they don't explain as well is that if disc gets squeezed (like a toothpaste tube) and material is pressing on your nerve sometimes takes 6 to 8 weeks for the body to deal with the proteins. That's usually why they don't send you for xrays etc until after that time. That's how I was left with permanent nerve damage in my left leg. 8 months until they decided I needed surgery so get them.to explain everything and keep.pushing.

[fren in reply to Hidden]

Poopadoop, that is really helpful, I can walk 10 or so steps normally, then my abdo muscles spasm like a steel girdle, followed by pain and weakness in my upper thighs. Stepping backwards could break the spasm, I will try it. I just want to be able to walk my dog.

[Rocketronzy in reply to fren]

Best of luck with that my friend.

[Soraya_PMR in reply to Hidden]

Never tried walking backwards when my discs were bad. Have done a few times when playing bowls, and noticed a change in muscles or action? But not noticed enough to make a memory/remember (pred head)....until you said that. Interesting, I’m going to try some regular backwards motion.

[Hidden in reply to Soraya_PMR]

It does use different muscles and their memory. Sometimes walking forwards is impossible. Can't lift feet up forwards but can slide then lift going backwards and for me it didn't take long to just stop the forward muscles spasming. Hope it works.

[fren in reply to Hidden]

I'm in trouble again.

Daughter and son-in-law have just burst in and accused me of doing a 'rain dance'.

An hour ago they set off for their teaching sessions heading out with brilliant sunshine decorating a bright blue sky. They have returned soaked.

I tried to explain, It wasn't my fault. I did do the 'rain dance', but backwards, to test out our 'muscle release' theory. I was sure that would keep the rain away.

Daughter has a comment. Any idiot (me) walking backwards outdoors needs to carry a selfie stick with a large mirror attatched.

Son-in-law suggests GP prescribes Tango lessons.

I'd be happy with that if it included a dishy partner.

.... forwards and backwards, forwards and backwards, forwards and....... oooh could keep this up for some time.

[Hidden in reply to fren]

😂😂😂 I used to have to do it at work. The students thought I was mad and if you have ever tried to pick a piece of paper off the floor at the same time it genuinely looks like a rain dance.

[Hidden in reply to Hidden]

Reminds me of one of my horses that developed a bad back. She used to have to walk backwards when she got up before walking forwards.

[Soraya_PMR]

Phew! That sounds better I’d kick Ms Rheumy into touch and stick with your GP/Primary. Sounds like he has a more realistic grasp of events. Do you need to increase to get the CRP & ESR down?

[fren in reply to Soraya_PMR]

Like you, Soroya, I am reluctant to treat the inflamatory process until the tests have been done, It is like taking strong painkillers then trying to explain where the pain is and how bad.

Thankfully it is only two days, then I will need advice.

[Soraya_PMR in reply to fren]

Ah, I’m with you, yes, best to wait the two days. Sorry read your post too quickly. Roll on Friday!

Give Pred Dog a tummy tickle from me. Cushings dog has an abscess from sebaceous cyst, more AB’s. She’s been very quiet past few days

[fren in reply to Soraya_PMR]

Ooh not nice for doglet, give her a gentle hug from me.

Caymen will love his tummy tickle, he is begining to lose that grey/black crust on his tum. He is off the biscuits and enjoying his fish and potatoes. Pred down from 32 to 20.

[Soraya_PMR in reply to fren]

Good boy Caymen x

[SheffieldJane]

Oh good luck fren!!! I like the sound of your doctor. 🍀

[fren in reply to SheffieldJane]

Oh Sheffieldjane, he is good looking too, and has a wicked sense of humour.

I do have a little leverage, my son-in-law teaches his son at the local Collège.

....and no, you can't have him.

[karools16]

Love your opening sentence..'delightful appointment with my GP', Wish it were like that for more of us.

[Rocketronzy]

I’m the same in bother because I when back to 4 from three. Doc says must not without seeing them. But at least I won out a little because he has prescribed 3mg a day. As I should be going down to 2 now 😤 its a battle between pred and Doctors.

Peeing me off a little now.

Then I here of people taking tons of morfeen tramadoll and all sorts of nasty s they ruined my sisters life with Valium 😬 pred as been nothing but good for me. Never put an ounce of wt on nothing.

[marigoldb in reply to Rocketronzy]

Have you tried the 2 and a half gr pred tablet. I’m down to 4 and am going to do 3 and half for a while, then 3. Its around these numbers I had a flare before, so hoping going really slow this time will prevent it.

My gp was happy to give me an assortment of preds. Certainly my stomach is happier on the gastro resistant tabs.

[Rocketronzy]

😬 it allways one or the othe Doc v Rumi.

It’s a bit like Good cop bad cop. 😲

[fren in reply to Rocketronzy]

Oh how I agree with you Ronzy.

I too have tramdol tabs in the cupboard, which are now being used for our dog, with the vet's full permission. Silly to buy dog version which is identical to human's. Nice to put them to good use, they are no good to me, took one once for pain and never again!

You may find it more comfortable to reduce in 1/2mg steps at such low doses, perhaps using Dorsetlady's dead slow plan. You can cut 1mg tablets in half (with a pill cutter- available at chemists) I reduced 1/2 mg every 2 weeks at the end of last year and even that was too fast. I would take at least 3 to 4 weeks if doing it now. I flared at 2mg.

When I get back to reducing I intend to take as long as it takes, thankfully with GP backing.

Perhaps there is a more sympathetic GP in your practice who would listen to how these reduction affect you, (write it down and take it with you). You can explain that a slower reduction would improve your your quality of life.

Keep your chin up and let us know how you get on.

[Rocketronzy in reply to fren]

Thanks for that good idea I’ll try half’s

What symptoms do you get with flare

Regarding more sympathetic doctor

They all seem to pee in same pot 🙄

[PMRpro Ambassador in reply to Rocketronzy]

A flare is a return of the original PMR symptoms. It can either be without changing your dose if the illness gets more active or because you have reduced the dose too far and let the inflammation escape - either way, it is a sign you may need a bit more pred.

[Rocketronzy in reply to PMRpro]

Thanks for that. 😊

🍀🍀🍀

[Hidden]

Oh Fern, this was a half good/half not so good post, I felt! I love that your GP is reasonable, good looking, and has a wicked sense of humour! All that makes for a "delightful appointment." I'm not liking that your Rheumy is a "bully." However between the GP and the eye doctor, maybe you can stay on right track! Best of luck we are all rooting for you!

[fren in reply to Hidden]

Good morning Mellissa,

Madame F. is a classic grey haired 'I know what I'm doing' sort of Rheumy. She is practical, super efficient, (examination, Xrays, diagnosis and treatment -steroid injection- in 30mins). She does not seem to relate to pain or discomfort, but that doesn't matter if she gets me better. Exactly what I needed when first diagnosed. "This is what you have, and this is how we treat it".

In January, when treating my knee, she did seem a bit miffed when I said 4mg was leaving me in inflamatory hell and I had upped it -flare dose + 5mg =7mg. I remember her dictating the letter to GP, but I wasn't really listening, and she made no allowance for my limited language. So she probably said then that she wanted me off the pred.

I got the feeling that she doesn't see PMR as a 'proper' Rheumy illness,and is uncomfortable with the more flexible and patient involved approach required.

Luckilly, changing your consultant is your right here and I got the distinct impression GP was guiding me in a 'horses for courses' way towards finding someone else.

As for today, it's the Doppler man. will let you know how it goes.

Cheers, Fren.

[Hidden in reply to fren]

Good luck! I hope it works out and you are happy and comfortable with who ever you end up with... I thought about changing to Rod Hughes, because my Rheumy is not as "personable," as I would like. Not "touchy feely" and not really empathetic... but she seems to know her stuff, I think. Dr Hughes said she was good... I had lost faith after her 1st taper down plan neatly killed me, but I guess she had to try the aggressive approach first, and she that it was not for me. She is now much more conservative and the plan seems to be working albeit so slooooowly. I'm down only to 50mg!!!! I started at 60 in November!!!!! Ahhh well. Fingers crossed for you! xxx

[PMRpro Ambassador in reply to fren]

Hmmm - not sure I'd want her for any rheumatic disorder then. All of them require a sensitive and patient-centred approach. They are autoimmune illnesses, every patient will be slightly different and not necessarily served by iron discipline. They aren't "treatments" in the sense of achieving a cure, they are management plans to manage the symptoms and achieve quality of life. Lots of rheumies seem to perceive PMR as "beneath" their skills - but really very little of their field involves cures, even now with biologics. Perhaps they are disillusioned - but if so, they aren't in the right job.

[fren in reply to PMRpro]

I know you are absolutely right, but somebody somewhere must love her. She has tried to help me in her own way but now is the time to move on.

It really is the fault of this forum. All that growing self confidence in normally defferent and subservient patients caused by knowledge, discussion and pooling of ideas has left me more expert than her. ...oh horror, ......how nice.

Now we all need a rheumy who is so interested and challenged that they will try to keep one step ahead in the research area and treat us like sentient beings. They might even secretly follow the forum themselves.

[PMRpro Ambassador]

Good start - can't the GP manage the pred?

medlineplus.gov/ency/articl...

in case you are interested (this was OH's field so he says it's really a Duplex you need not just a Doppler measurement). The inflammation of GCA in the arteries can cause peripheral vascular disease over the longer term but the inflammation itself could narrow the vessels I suppose.

That CRP is definitely creeping up - you are in a flare so don't leave it too long. Silly rheumy - control freak maybe?

[fren in reply to PMRpro]

Yep, PMRpro, he can and he has done since Rheumy diagnosed me a year ago, and he gives me a lot of leeway to follow my instincts with Pred. I went back to her this Jan for help with my knee (GP was away skiing with his family) and I just needed treatment urgently.

It was me who raised the issue of seeing Rheumy for further investigation of the back pain and walking problem. I don't think GP had really read her letter before yesterday, as the situation was resolved. He was genuinely shocked at her attitude and kept saying this is not possible, don't make an appointment we need to talk about this on Friday.

Rheumy was exactly what I needed when finally diagnosed Jan 17, and helped immediately with my knee this Jan. I think she just has no real interest in PMR and is not comfortable with the flexibility required to treat it well.

I'm very conscious of the CRP, but in fact don't feel too bad today. Will let you know how it goes,

Cheers Fren

[nuigini]

This is of great interest to me Fren. I have similar issues with walking and am very keen on hearing the results of the Doppler test. Best of luck in getting to the root of the problem. I had problems with my legs before being diagnosed with PMR and although the docs seem to think it was undiagnosed PMR, I've never been totally convinced.

[LarryLeek]

Yea if your rheumatologist is getting upset because you take it upon yourself to increase your preds. They are NOT qualified to deal w/ PMR. ONLY you know how you feel when attempted cut backs fail. My rheumatologist is great about this, he even told me I was doing a great job in determining if a cut back worked or not. I just recently went down from 10mg a day to 7.5 & it didn’t take so I went bk. up to 10, we’ll after it turned cold & 2 weeks later even the 10 wasn’t getting me bk. To pain free, was having trouble sleeping due to pain in my shoulders, arms & hips, SO I went bk. up to 15mg & that did the trick. When I went to see my rheumatologist this past Tuesday the 6th. ( hadn’t seen him in 2 months) I told him the whole ordeal & he told me I did the right thing. Find a rheumatologist who KNOWS how to deal w/ PMR. Sadly when I went to see him Tuesday he told me for the first time since I was diagnosed w/ PMR 15 months ago that my blood came bk. perfect but yet the PMR has cause me to go bk. up on my preds. So obviously it’s verY unpredictable. I still believe 100% that it has something to do w/ the cold/damp fall weather, I think how things go during the winter as far as dosage requirements vs come spring/summer will determine that. To be continued. Good luck in finding the right Doc.