Odd symptoms, not feeling myself

[Travs]

Im having to take another day off work today. I only walked in to town to pick up my meds from the chemist but I was all wobbly, shaky and sweating profusely. I also couldn't think straight again.

So much has happened in the last month with 3 new diagnosis all at once its hard to know where to put the blame, this is rather embarrassing for a clinician but as I say my head is not my own so at least I have an excuse.

As a new diabetic I thought it would be my blood sugar but at 8.4 that was fine so could it be the GCA ? its the condition I know the least about so a prime candidate.

Now that Im home I have a headache and my vision is blurry, a migraine perhaps ??

On a more positive note 3 weeks after the GCA suspicion I finally have a date for my temporal biopsy this Friday.

Until then I guess I got to take it one day at a time.

[PMRpro Ambassador]

Sounds like one straw too many for the camel's back! I'd like to think that, with those symptoms, the biopsy will be positive - I know, that sounds awful of me but you have suspicious symptoms, if it is positive you do know where you are! A negative result is nothing - they just didn't find what they were looking for and there are all sorts of reasons for that.

[Travs in reply to PMRpro]

I feel the same PMRPro, Im not holding much hope though as I have been on Pred since early November and at 60mg for the last few weeks so Im expecting the giant cells to be in another solar system by now which of course will leave me in the exact position Im in now. I questioned the point of the biopsy with my Rhumy but she wants to justify the high pred dose if we can. As for the biopsy Im certain I only got the appointment today because I rang to chase it this morning. What with xmas I think that perhaps Max Fax were not reading their emails and I got overlooked. Its a disappointment but at least my sight has been protected with the 60mg, that may have saved them an expensive court case. I was reading about early access referral for TAB within 24 hours so to have to wait 3 weeks and then chase it yourself sounds a bit negligent to me. Im not one to complain though so Im going to bite my lip.

[PMRpro Ambassador in reply to Travs]

Fight your corner though if they try to say a negative is conclusive. Because it is NEVER 100% conclusive - positives get that privilege!

[Devoid in reply to Travs]

Hi just to add I had negative biopsy after 9 days on steroids but then had a cat pet scan which showed very clearly the extent of the inflammation, did make me wonder why they still go for biopsy when they can rarely do it straight away

[SheffieldJane]

I am sorry that you are feeling so bad at the moment. It is a worrying time for you, with the diabetes to contend with too, all in the middle of the silly season. I am not surprised that you feel as you do, it’s perfectly logical. Good luck with your temporal biopsy on Friday. You are already on GCA dose Pred. That won’t help with your anxiety levels. At least your eyesight is safeguarded. Scrolling down, I see that you have argued about the necessity for a biopsy at this stage. How I wish that expert ultrasound testing was available to all of us. Let’s hope next year brings better things.

[Travs in reply to SheffieldJane]

Yes I thought the same Jane its like living in the dark ages they will be getting leaches out next lol

[Yellowbluebell in reply to Travs]

Leeches are still used in various places around the world and even a big UK animal specialist uses them!! It's just the thought of anything blood sucking that puts us off

[PMRpro Ambassador in reply to Travs]

They are used: health.howstuffworks.com/me...

So are maggots ...

[Yellowbluebell in reply to PMRpro]

They eat away diseased tissue really well. Not everything old fashioned should be forgotten!

[HeronNS in reply to Yellowbluebell]

And isn't there a treatment for feet where little fishes eat all the dead skin away?

[Yellowbluebell in reply to HeronNS]

Yes! Its considereda beauty thing as well!!

[HeronNS in reply to Yellowbluebell]

Although when I looked it up just now it turns out it's being banned in many places - cruelty to the fish and concern about the same fish treating different people. I guess it's just a cosmetic procedure.

[Yellowbluebell in reply to HeronNS]

Not sure even taking out animal cruelty i would consider fish nibbling my feet a beauty treatment!!

[HeronNS in reply to Yellowbluebell]

I don't know. I think almost anything would make my poor feet look better!

[Yellowbluebell in reply to HeronNS]

Are your feet suffering from something or do you just not like them? My girls both hate their own and everyone else's bare feet!!

[HeronNS in reply to Yellowbluebell]

My doctor once told me that my feet would have been perfect if I hadn't worn shoes. Difficult shape to fit, very narrow heel, wider forefoot, a Morton's foot, more elegantly called a "renaissance foot" with a longer second toe. Ended up with really ugly bunions, and have had arthritis for decades. Recently another doctor took one look at my feet and asked me if I'd ever considered surgery, but when he saw that they were still amazingly flexible given my age and their condition he shut up about that! The main problem is because shoes deformed them, and almost all footwear hurts them, I can't wear pretty shoes. Which means I can't wear skirts and dresses. So, yes, I'd say I have problem feet!

[SheffieldJane in reply to HeronNS]

I wear suede ankle boots by Gabor - really comfortable - wide fitting and soft, I have all the colours and team them with dresses and skirts. I have Psoriasis on my feet and I suspect arthritis, this has solved it.

[HeronNS in reply to SheffieldJane]

I need major support, and can't wear any kind of heel. Although I had a quick look at their page and they do look cute. But....

And not available where I live.

[SheffieldJane in reply to HeronNS]

I find that because they are a boot, and flat, that I do feel safe and they don’t rub my sensitive skin.

John Lewis do International delivery and stock them - or they used too. They aren’t cheap, so it’s a risk. I searched everywhere for something that was comfy, with support but not clodhoppers.

Amazon, who seem to be taking over the world probably have Gabor footwear.

[HeronNS in reply to SheffieldJane]

I will never again buy shoes I've not not tried on. I discovered these nice sneakers by Fitflop. Unfortunately the store which sold them stopped stocking them (btw the same store which no longer carries Gabor) so I ordered what looked identical ones from the company. That was an adventure as they didn't ship to Canada so I had them sent to my cousin who then mailed them to me. Only to discover that although they looked identical they'd done something to the construction and both pairs were unwearable by me. Had to give them away. Found old stock from a Canadian store in another province and now I treasure those. But I do need the kind of support modern running shoes give so comfort is not all I need to look for. Even the Fitflops only work for being indoors, not for my long osteoporosis-preventing walks. I wish they made running shoes which didn't look like running shoes. I suppose this reply is relevant as it is a health issue for me.

[Yellowbluebell in reply to HeronNS]

I have to agree with you i am afraid! It doesnt help that women love high heel pointed shoes as well. Must admit i live in trainers or ankle boots like jane does. Tried high heels shoes for daughters wedding and ended up ditching them asap. I have lots of shoes for when in court but cant walk in most of them now so have got the smallest kitten heeled shoes possible to wear with robes. I hate shoe shopping as well which diesnt help!!

[HeronNS in reply to Yellowbluebell]

I don't think women would love high heels and pointed toes if the powers that be didn't brainwash them. I distinctly remember my stepmother being amused by the newly fashionable pointed toes in, was it the early 60s?, as that was what her grandmother had worn! In order to tolerate being dressed up for a dance, for example, I wore stretchy gold pull on slippers, Then a few years later comfortable flats and rounded toes came in and for a short while my feet and fashion sense were happy.

[PMRpro Ambassador in reply to HeronNS]

It is said that if all older ladies wore trainers chiropodists would be out of business and hip replacement manufacturers would have much lower profits ...

I don't possess any shoes for posh purposes!

[polydoodle in reply to Yellowbluebell]

I have actually had this done on my feet, and have to say, after the initial tickly sensation, it was very relaxing and my feet felt marvellous afterwards.

[Yellowbluebell in reply to polydoodle]

Not sure i could stay still enough!! Very ticklish especially my feet. My husband would be happy to use it as some form of torture i am sure!!

[PMRpro Ambassador in reply to HeronNS]

cdc.gov/healthywater/hygien...

Somewhat disputed it seems ...

[SheffieldJane in reply to Travs]

I might actually trust leeches more.😉

[Yellowbluebell in reply to SheffieldJane]

I wouldn't object to leeches if i needed them tbh.

[HeronNS in reply to SheffieldJane]

Didn't they once refer to the doctor as the leech?

[SheffieldJane in reply to HeronNS]

I once came back from a visit to see some duck billed platypuses in their natural habit through long grass to their pond ( in Australia) I came back with my legs covered in rapidly swelling leeches. I might have panicked but my darling children were shrieking with laughter at the time. They got them off and I was left with blood streaked legs as the leeches had injected an anticoagulant. I can imagine medical uses. Totally painless.

[HeronNS in reply to SheffieldJane]

Sounds awful, but how clever that you didn't feel a thing!

[SheffieldJane in reply to HeronNS]

I’d submit to them everyday, if they removed PMR from my blood. 😂😂😂

[bunnymom in reply to SheffieldJane]

Drastic but I agree. If I didn't have to touch them!!!

[PMRpro Ambassador in reply to HeronNS]

Maybe it was the bill they sent ...

[HeronNS in reply to PMRpro]

Maybe that's where the other meaning of the word "leech" came from.

etymonline.com/word/leech

[Constance13]

Travs, with all that going on it is difficult to understand how you can work at all. Poor you!

I hope they can "sort you out" soon.

Good luck!🍀🍀

[Travs in reply to Constance13]

Thank you Constance Its guilt mostly I may be feeling ill but others rely on me and its our busiest time of year so I'm letting my colleagues down too. Not to mention all those who need my help. Having said that sometimes I just don't feel safe to make life threatening decisions so I have to bite the bullet.

My Mrs has just suggested my symptoms may also be because I have been reduced from 60 to 40 on the Pred this week by the Rhumy that is a big and sudden drop, maybe I should talk it over with my GP. I will see how I feel over the next few days.

[SheffieldJane in reply to Travs]

That is a big drop. Is it to do with getting a more accurate biopsy result?

[Travs in reply to SheffieldJane]

good question, I dont know

[PMRCanada in reply to Travs]

Too big of a drop I’m afraid. Perhaps drop to 50 instead, see if there is relief from the horrible symptoms you are experiencing. I believe the golden rule is to not drop more than 10% of your dose at one time.

Regarding the guilt of letting others down, your health is the priority now, and sometimes you must advocate for it with others or healthcare professionals. Put yourself first...even if it feels uncomfortable. Once you’re better you can focus on helping others. Wishing you all the best with solving the latest “puzzle”.

[Constance13 in reply to Travs]

I do wish these doctors/rheumies would go back to the drawing board! That jump down is far too much.

Try not to feel guilty, it will only make your symptoms worse. You do your very best - no-one can expect more of you.

Hope you have a better time in 2020.

Greetings to you and your family.

💐🍾🍸💥💥

[HeronNS in reply to Travs]

You must not feel guilty about being ill. If you had a broken arm or leg would you feel the same? PMR/GCA is a serious systemic illness and just because it's invisible to others doesn't mean it isn't as real as any other physical ailment. And a drop of 30% in your medication is too much no matter what your dose level is. From the high doses it is usual to taper by 10 mg at a time, some people even then finding it easier to make two smaller steps of 5 mg to attain the same result.

Your incidence of shakiness does sound like blood sugar. It's important while you are adjusting to your new medications way of life that you be extra kind to yourself. Take time for a rest now and then. It will get better, but right now your body, as well as your soul, needs some tlc.

[PMRpro Ambassador in reply to Travs]

Very likely - honestly, 10mg every 2 weeks would get you to the same place with less adjustment. And fancy doing it at this time of year!!! It MIGHT help the result but somehow I doubt it.

[polydoodle in reply to Travs]

I felt like death warmed up when I was on high dose Pred. Never felt so ill in all my life, but they are a necessary evil I'm afraid Travs. Hope you get sorted soon.

[Devoid]

Shaky,wobbly,sweating all experienced on high dose steroids, much better now reducing and also taking the steroids in the early hours.When I started I was taking them at 9 a.m and the shakes were horrendous until mid afternoon

[Travs in reply to Devoid]

Ahh that's very interesting thank you

[Hidden]

Hi Travs, I have the exact same symptoms. I have GCA and have gone from 80mg of Prednisolone to 14mg.

I don’t have any help or advice for you though. David