Hope you are all coping with the heat wave and managing to keep cool.
Since my post I have only taken Omeprazole alternate days and taken the advice of eating porridge and yogurt when taking prednisolone. The result have not been too bad amd although there is a little heartburn, it is bearable. I have not taken AA for 4 weeks.
I had my Rheumatologist appointment on the 23/07/18 and he agreed with stopping the AA as I am only on 2 mg of Prednisolone. He also advised to discontinue the Omeprazole. I did discuss the need for a Dexa Scan and he has referred me for one (hope the wait is not too long). He asked about any symptoms, including eyes, headache or jaw pain. Checked my muscle strength and felt for any raised glands. Also advised that my repiratory and cardiac sounds appeared satisfactory. A blood test done at the GP surgery had to be repeated prior to the appointment but previous month was good. Advised to continue the slow tapering, encouraged to return to exercising but be sensible and not to run any marathons. He has discharged me but advised that it can flare up at any time so happy for me to be re-referred if required.
Today my GP rang with my latest blood result and white cell count again slightly raised and also platelet count slightly low. Rheumatologist had said check bloods again in 2 months but she has decided to recheck in a month as he did not have the current result.
So in summary, hopefully progressing well but think the next few months will be challenging as I am due to reduce the Prednisolone slightly for another month. Some days I feel really good but other days have noticed a bit of low mood which is unlike me. Things have been very busy, work challenging and some days stress levels through the roof. I read all the posts and have learnt a lot about pmr and how to cope with it from this supportive site but it is hard at times. I think people around me think I am fine now as only on a low steroid dose but as you know this is not always the case. My aim for the next few months is to try and bat away stress and concentrate on improving my health both physically and mentally. Currently not sure if tiredness is due to coping with the heat. Lovely if on holiday but takes all your energy while working and doing daily tasks (one of my stressors as everything is piling up. Too hot for ironing or housework)
Sorry for the long post and hope everyone is hanging in there.
Have a lovely weekend
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Mitziecat
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First of all, what a Beautiful 'Name'! I'm glad that you are managing, to reduce, your Prednisolone this something that I just can't get below 6mg. If I try then the Vasculitis begins to 'Show' again- how do I know this? Well, apart from not feeling well, my Left Eye gets red, which is a Visual Marker, that there is a Problem starting. My Doctors/Consultants have now ALL agreed that, my dosage, will have to remain at 6mg.
I'm going to have to ask you what 'AA' stands for, I know that I'm probably being Really Stupid here and, yes I Will probably 'Kick Myself' but..... Sorry to be so apparently 'Dim' here.
To answer your question, regarding the Heat....I can't think of a Polite answer, other than, Yes it DOES have a considerable impact. (We had some rain, and thunder, earlier and I put on swimming trunks and literally 'Stood out in it'.) It's as warm as f-, f-, no wait, as warm as a Furnace (that's what I meant) again now.
I do wish you well Mitzicat and sorry, once again, for the gnorance.
I Certainly didn't Mean To WORRY you, Sheffieldjane, I can assure you! Please do check, with your Doctors/Consultants, by all means, but just because this IS a 'Marker', for Me, definitely DOESN'T mean the same is true, for you.
Thank you, for the information, I don't feel as Stupid now- Alendronic Acid is not that obvious, after all.
After, quite a few years, of tests/treatments my final 'Diagnosis', appears to be, 'Non-Specific ANCA Vasculitis, with Several Overlapping Strains'. My Condition attacked my Brain- causing considerable damage- my Heart, causing a 'Weakness' in the Pumping efficiency and Finally kidney Damage. I had a Kidney Transplant, in July 2013, following Four years (almost exactly) of Dialysis. I now live in Supported Living Accommodation, though I do have my own Flat. In my case this means that I am Accompanied, when out of the Flats, and can ask for Assistance , should I need it, at any time (day or night). I deal with my own cooking, washing, medication and Drugs. I also do, my own, Personal Care on a daily basis. and am responsible for my own Finance/bill paying.
I also regularly see my Mother, in fact, she is coming tomorrow morning about ten. We regularly go to Church and were both Confirmed, on Sunday the Nineteenth of June 2016 (yes I did look that up). I have a Father, and Stepmother, who live in Suffolk- near Bury St Edmunds. I also have a Sister, who I never see- best not to ask!
Anyway, I THINK it might have Cooled Down enough to sleep now, might...….
Thank you for your reply. You have already been given the name for AA so won’t repeat it. I was worried about the effect of taking it over a year so decided to stop it as my steroid dose is so low.
The weather seems a bit cooler today after the rain so hopefully we will all be a bit more comfortable. So sorry to hear about the effect that your diagnosis has had on you but you sound like a strong person. Keep in touch with us all on the site as it does help.
Hi Mitziecat, You seem to be doing very well. Glad you are coming off AA and Omeprazole. I hope your Dexa Scan is good. It will be about a year before you are fully yourself I guess and I know you’ll help it along with good nutrition and gentle exercise. Sorry that you feel low, apparently that’s common when we come off steroids too. I manage to dismiss my low moods as not really me and just the pills most of the time. Be careful not to let it get out of hand though, there are effective treatments.
Don’t be in a rush to ditch the last 2 mgs. It will do you no harm and is amazingly effective. Go well!
Thank you Sheffieldjane. I feel that the low mood may be due to the medication but also need to slow down and relax more. Will not be rushing the last few doses of Prednisolone and hoping to keep well.
I do feel lucky to have got to a low dose and will try my best to maintain it there if any problems going lower. It is awful when you feel so tired but you just have to listen to your body and rest at such times. I find it difficult to see things that need doing so I crack on with it but know I should just leave it and rest. Hoping my return to exercise will help.
Did my first Zumba class on Tuesday. Not been for 18 months. Suffering a bit with low backache but hoping it is due to all the twisting and turning 😀. I am going to have to know what is normal after exercise stiffness and what is due to pmr.
Slow and not too repetitive for exercise, build up gradually. It will come, but gently, gently is the answer. Is your Zumba teacher aware you have PMR? Some may be a bit strenuous to start with.
Would guess that a lot of your fatigue may be due to Adrenal glands still not up and running at 100% yet...another reason to go slowly on the Pred reduction. If you are at 2mg then quite safe to jog along at that level - no side effects. If some days are too bad then even a small increase of 0.5mg might be enough to make them better days!
Thank you for your reply. I didn’t explain to the zumba teacher about my condition but made sure I was at the back and did the routine to my own level. It can be very fast paced with lots of twisting and turning of the back and hips. Even doing it slowly I felt the backache next day. Appear to be wearing off now so reassured it must be post exercise. Happy to be at such a low dose and certainly mo rush from here on.
Regarding fatigue, I am monitoring it and it comes and goes. It also seem to depend on my mood. I have had a lot of stress in the past 6 weeks with work and family problems and that is when I notice it most. It is hard not to take on family problems and I am so aware that stress played a big part in triggering this awful condition. If you can shake it off I feel that so many symptoms would disappear. However, I am thankful everyday for reaching the stage that I am at as it could have been so much worst.
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