Not PMR

Hi Snaggler

I'm so sorry to hear that you are still suffering but at least som positive results are coming through and some action being taken. I do hope you don't get diagnosed with diabetes on top of all this - ou may find altering your diet a little could help in this direction, for instance reduce the carbs such as white potatoes and bread which turn to sugar in our bodies. Hopefully though your sugar levels will improve as you reduce/come off the steroids.

Increasing intake of oily fish, beetroot, avocado, garlic and turmeric can be very helpful with inflammation.

Also, if you haven't had a Vitamin D blood test, it may be wise to ask for one as a deficiency can lead to many health problems including pain.

My best wishes,

MrsO

I've been on a low carb diet for months on end and still managed to gain 40 pounds on prednisone. The dietician and doctors are dumfounded. It is hard to get a grip with what is going on. So part of the reason I need to get off the prednisone is because it has done some really weird things to me that usually doesn't happen to other people. Either way we will get to the bottom of this and fix it the best we can.

Snaggler

Fingers crossed for you - great to hear how positive you are sounding, so keep it up and do keep in touch.

MrsO

Hi Snaggler - what a mixed message for Valentine's day! At least it is some progress even if it doesn't feel like it.

If your doctor thought it was PMR the dose shouldn't have been above about 20mg - PMR responds to that and most other things don't. The fact you had less pain to start with with 50mg is not surprising - that was the sort of dose they got miracles with for arthritis in the early days before they discovered the long term side effects of such high doses. That is one of the reasons for just trying with a lowish dose - if the symptoms respond it almost certainly is PMR - but if not then they shouldn't just up the dose until something happens as that might be masking something else causing similar symptoms. And if the doctor doesn't know what he is doing - he should ask someone who does. I'm so sorry you've had this awful experience Snaggler - and as carol said on the other thread - do come here and scream and moan any time you like if it makes you feel better for doing it. Might save the cat too ;-)

Eileen

hi what a muddle snaggler your mind must be in a spin ,steroid induced diabetes is something that can happen but can resolve once steroids are eliminated.i do hope they get to the bottom of it all and you are eventually pain free it must have kicked your confidence in the pros but hopefully now they have eliminated pmr they will concentrate on your other problems . keep in touch carol k

well the tests came back and I am not prediabetic or diabetic so that answers that. I wonder if I do have PMR and the high dose just caused trouble for the CLL. I think there are more then one arthritis going on is the trouble. Anyway I will get my answers eventually.

Hallo again, Snaggler. Haven't been here for some tim; waiting for new system to settle!

I think one of the most dipiriting things about PMR are the contradictory advice/doses/ reduction regimes et. etc. that are offered. I have every sympathy with your views on the horrible drug and to have it wrongly prescribed is just too awful.

It was correctly prescribed in my case and I still hate it. I have OA as well as PMR but I might not have PMR any more and it's a case of suck it and see.Down to 3 and not comfortable but then OA does not make for comfort, does it?

Good news about the diabetes. Do hope things improve and they get you sorted.

Our problem is we have the "wrong" diseases.

Best wishes Betty.

Hello Snaggler

I'm sure that is such a relief for you to hear that you're not diabetic - one less thing to worry about and another little positive to hang on to. I do hope once the medics have gone through the process of elimination they come up with something that is treatable to relieve you of your pain.

The very slow reduction in the Prednisolone should prove whether it's PMR or not and whether you are suffering from severe side effects of the high dose steroids.

Other things we suffer from do so muddy the waters - I have spondylolisthesis (a slippage forward of the base of my spine) and just at this moment I don't know whether I'm having a flare in PMR symptoms, steroid withdrawal effects (I'm down to just half a mg of steroid every 4th day, after 5 years) or simply my spine deciding to join in the 'fun'!!!

Not too long to your next appointment now (though I'm sure it seems like an eternity to you) - everything crossed for you.

MrsO

My cancer doctor has suddenly started to monitor me much closer, seeing her more often now. My beta globulin has gone up and the gamma globulin has gone down. That points to myeloma which I do not want to have. The beta globulin is still in normal regions but went up. The gamma however is low. So that probably means I have a genetic disorder which includes MS, RA and Crohns. Other people in my family have those three so that is why I wonder if I do to. The waiting part is very hard for a type A personality. I would rather have any of the ones my family members have then a secondary cancer to the CLL/SLL.

I see my Rhuematologist on the 27th and it cannot come soon enough. I will be so glad if he says I have AS or RA. The cancer thing sounds worse then CLL/SLL.

Predinsone interfears with test outcomes. The blood protiens included so I am not sure how they can get anything accurate whilst I am still on 40 mg.

I am going down one pill a week from now on as per my cancer doctors orders. I

My cancer doctor never monitors me closely so I am scared now because she wants to see me way more often. I have two young children at home still, ages 11 and 9. My 50th birthday is next month and I am not ready to be part of the choir invisible. I know I can fight a fight but not if I am already too far gone. I pray these doctors do not wait too long.

I also pray that my Rhuematologist has arthritis news for me and it is not myeloma.

As you can see I think too much! Type A personality.

Two years ago today my Dad died from renal failure which led to congestive heart failure, he was only 79 and had to be dragged to doctors. I know he waited to long for medical help. So today is a bad day for me and I am not ready to join him where ever he is.

Much love and respect

Snaggler <3>

der snaggler i am not sure if you know that i was a clinical nurse specialist in cancer care retired for some years so not totally up to date on drugs etc but some things do not change and that is the emotions you are feeling no one facing uncertainty avoids the doom and gloom mood wether type a or z !!! but one thing is sure when they finally come up with some answers all the services kick into gear and you feel less suspended in fearfull land and more able to plan how to manage what ever life throws at you .nothing is more difficult than managing family and illness its like playing a part in the a play where you cant allow yourself to show how frightened you are so keep coming back to us and be as negative as you want we will rejoice with your good news and empathise with the tough times .alongside you for as long as you need us all carol k

Snaggler - I can only echo Carol's words - we'll be here to listen to your worries and try to help in any way we can from so far away if you want us.

Yes - the cotton wool brain bit doesn't change I imagine. I remember that so well from when my husband had cancer 19 years ago. The feeling of fear that is associated with the mention of any sort of cancer is awful and paralysing and I wouldn't be in your place just now for anything. However - the fact your cancer specialist wants to see you more often has positive sides too - she is sitting there in case it turns out she is needed. And with your CLL it is bound to be complex anyway if it turns out you have all the other bits in this genetic syndrome - but the pred is clouding the lot as it interferes with the tests.

Your children are the same age mine were when David had his cancer and, yes, it is horrible for them when a parent is ill with something really nasty but they are surprisingly strong as long as you are honest with them. If there were an emoticon here I'd send them hugs but it'll have to be just words.

I'm sure you feel worse because of the anniversary of your dad's death - isn't it strange how we perceive old, young or "only" ages? My mum was also 79 when she died of heart failure but I saw that as a long and fulfilled life - my father died at 49 when I was 17 and my brother was 12. My mother in law was 83 - David's dad also died at 49 when the boys were 13 and 8. 80-ish seems pretty good to me. But whatever age it doesn't stop the hurt and missing them does it?

Whatever transpires we will be here though for your negative moments - expressing those fears and the anger does help relieve the pressure that makes you feel y ou will burst and you can do it here even if you feel unable to say it to family for fear of how they will react.

As Carol has said, it is the unknowing that is worst. Once they have some form of answer and a plan of action you can apply the energy you are using up worrying to work on the problem, whatever it is. And she's right in that type a, type z - we'd all be in the same state you are in at the moment.

Much love and wishes for a speedy decision by the doctors as to what it is you are dealing with. Those heavenly choirs have just had a new member in Whitney Houston, they'll not be needing you to join for a while yet!

Hugs

Eileen

Snaggler

I can understand that yesterday must have been especially painful being the anniversary of your Dad's loss - such occasions are difficult for all of us but even more difficult to bear when we are already so low due to health problems ourselves.

You have a lovely young family and I'm sure they at least are a source of great pleasure for you (whilst at the same time demanding, I'm sure!!!).

Carol has kindly spoken for all of us, I'm sure - we, your friends (albeit virtual) are all here for you during the present difficult days and will still be here to share the future good days with you. Have you ever looked at the other PMR forum - it has loads of friendly advice from people with years of experience of PMR/GCA, plus lots of humour for that well needed chuckle - if I refer to the website here, my message will probably be held up by the moderators but perhaps one of them will come in and print it for you.

MrsO

Hi MrsO (and any others),

Until we get the requested changes can I suggest if you want to post the links to NE site/forums in a particular thread that you post your reply then post another straight after with just the links in. This means your original comment won't be hidden until I approve and also it is quicker having the message alerted than me coming across messages like this. I also have problems finding all new posts although I now have a program to do it so should be able to keep a better eye on things.

The website for PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk

The forums within the NE site are here - http://pmrandgca.forumup.co.uk

Thanks,

Alan

Thanks Alan, will do - sounds sensible rather than holding up a reply.

MrsO

Unfortunately I feel I am dealing with the three ring circus when it comes to these three doctors of mine. I am not sure I can trust anything they say when my body is in such horrible pain and they do not want to give me any reasonable answers. I seen my GP today and I told her how the oncologist wants me to go down on the prednisone as she felt it was causing all the problems with the cancer. GP only says when do you see the Rhuematologist. I say Monday, she knows what information he has but she won't say nothing. It is annoying. It is my health not hers. I know she cannot diagnose me as she did in the first place,. She was the one who said I had PMR and GCA. She still might of been right, don't know. Find out Monday I suppose. I still feel like its a circus. LOL! I think they are all whackadoodles.