Still here not forgotten you all

Still here not forgotten you all

Hi everyone

Sorry I have been a bit quiet but have had a bit of a hard time of late. Not sure which flared first to be honest but ended up crying once the PMR flared last week.

I have had to ring my rheumy nurse twice and both times they have increased my pred. I am now back up to 20mg. Will I ever be able to reduce? I get down to 12mg then BANG it all flares up. Been back on 20mg since Saturday and what a huge difference. The MTX is clearly not doing anything but got to wait til March 12th to see my rheumy to see what he is going to do next. Tried to get a cancellation but there are none so will have to wait :(

Today I have felt well enough to walk to town and take the kids for lunch, still ok-ish apart from my shoulders from pulling my trolly.

I got myself some thermal arthritic hand gloves at the cost of £20. I only need the left one for now lol.

On the plus side of all this my beautiful dog Harley is amazing. He now towers head and shoulders above our older dog but loves his cuddles and comes to my bed in a morning. We are going to get something that he will play with but at the same time pull me out of bed when I am having a bad morning.

Keep smiling :)


13 Replies

  • Keep smiling ,i am mtx not sure if helping or not still have a day after taken it when i feel lacking in energy and need a good push ,oh the joys ofPMR AND GCR life is fun maybe a magic portion will come soon ,one can hope .take care hope better day to day .

  • Try a heat pad or heated wheat bag on your shoulders to see if that helps; they are very soothing

    I love my dog too - so great for stress relief!

  • Hi Sue,

    sorry to hear you're struggling - bravely, knowing you.

    I too had a really hard time dropping down from 20mg to 12mg so don't think that it's unusual to be having this battle with PMR. Your illness seems to be quite active at the mo so you just have to go with the increase and perhaps drop more slowly next time. It took me 3 months to do this reduction last year, but I managed it - 1mg at a time every 3 weeks or so. I think the trick is, if you're feeling tired or 'off colour' wait until you feel better before you make the next drop. Remember, PMR is waiting to grab you by the throat, or in your case, the shoulders, every time you let your guard down.

    A wheat bag is a good idea for painful shoulders and it seems to take the stiffness away too.

    Pats. PS What a beautiful dog Harley is. I would love to have a dog one day, but I think I'll have to wait until I'm fit again - fingers crossed!

  • yes Harley is fab. Do you like the pic? My daughter has a studio at the bottom of our garden so got him in there. Our older GSD won't pose but harley loved it bless him. I think he knows how beautiful he is lol. :)

    I am suppose to be on 20mg for 2 weeks then they said to drop to 15mg. I say we will see lol.

    I had a good day yesterday and I slept quite well also. The walk to town must have done me good I am going to take it easy today though.

  • Hi Sue

    Really sorry to read your latest post - you are normally so cheerful! I have to say I think a drop from 20mg to 15 in one go is a bit much - and you probably think so too! Its 25% after all. I went down in 2.5 steps from 20 to 10. Had to go back a step at (I think 15, but can't remember!) I went down from 10 to 9 last Tuesday, but have had to go back to 10. Its really frustrating cos I want to be off the drugs but yesterday I could hardly move so had to give in and increased it.

    I haven't got as many problems as you but I do sympathise - all we can do is try to try to keep smiling but its gets difficult!! :)

    What sort of studio does your daughter have - is it photography? Its a lovely photo. I have an elderly spaniel, with heart and thyriod problems and she gets me out everyday. My daughter (who lives with us) also has a spaniel, with health problems, and would you believe, its on pred too!

    Hope you feel better soon


  • Hi Helen

    Yes I do think the 5mg drop will be to much I prob will do 2.5mg.

    I am much better on the 20mg and have got out 2 days running which is great. One of my older son's was her yesterday so we took the dogs to the local field just 3 mins walk round the corner and let them have a run. It was so nice as the weather was nice also.

    The "as many problems" made me chuckle, I suppose I do have a few lol :)

    Yes the studio is for photography. She is only 20 and set up her own business just over 2yrs ago and is picking up slowly but nicely. She already has about 8 weddings booked in for this year along with other shoots in the studio. She works part time in Argos also until her business is making money. We are so proud of her.

    take a look at her website :)

    Can't believe a dog is on pred, I hope it is helping.

    Take care and keep smiling :)


  • Hi Sue,

    The drop they are proposing is too much in my opinion - after all, where is the point of you yo- yoing up and down getting more and more depressed. Slowly, but surely is the way to go in my humble opinion. When I started to make 1mg drops, I could do it every 2 to 3 weeks and only had minor discomfort before I felt OK. Big drops were a no- no, after 10 months I had a big flare and was right back to 30mg. That was 15 months ago. Now I'm just about to drop to 7.5mg from 8mg and feeling pretty good.

    The photo of Harley is lovely - looks like an advert for very expensive dog food. Your daughter does a good job.


  • That's what's happened to me Pats a huge flare. But to be honest I don't know if it's more PMR or more RA, I am guessing PMR cos of my neck, shoulders and arms. It is good that I have rheumy at the end of a phone purely for my RA I suppose and being on MTX but they are the ones who increased the pred so I don't have to get to the doc's. I have 3 weeks til I see my consultant again but got bloods on Monday so it will be interesting to see if my CRP has fallen any being on 20mg of pred.

    Yes my girl is very talented and we are so proud of her.

    take a look at her work :)

    I think Harley would be a great show dog but don't know how to get started on it. He is my best friend (well apart form hubby) He gets more cuddles than hubby though lol. ;)


  • Hi Sue,

    I think 'showing animals' is quite expensive and often hard work, but I guess you could start in a small way with local shows etc, but perhaps it would be best to wait until you are feeling more stable health wise.

    Looked at your daughter's web site - yes she does some very nice work!


  • Thanks Pats

    I am just going to order the pic of Harley on a large poster print that is hardbacked so not to frame. I just want a good one of Millie now, she won't sit and pose :(

  • Hi Sue,

    You have obviously seen something I've missed, but I don't suppose it was cleaver - just another 'lost soul' on our site.

    I wondered why I was getting nothing yesterday - infact it's been rather quiet for a few days. I guess the guys at H.Q. have been doing the business.

    I've been busy today so just sat down at the comp to find a page and a half of 'back log'.

    Keep smiling, Pats.

  • Someone had replied but it was all about prom dresses and evening dress and extremely long. It was purely advertising. It had been left on 3 of my blogs and when I went into their page they had left it loads and loads of times on others too. I messaged them and the reply was the same advert. Not on when it has nothing to do with this site.

  • Hi Sue,

    advertising eh - well some folks are so desperate to sell stuff, I guess they'll try anything, but it doesn't help us does it? Dragging around in an evening dress would not be a good look for me at the mo! Baggy jumpers are more the thing when I am carry most of the weight on my midriff and still look 5 months gone.

    Still, at least it wasn't malicious, just thoughtless.

    Hope you're not too bad at the mo - I know those teen doses can be difficult.

    Myself, I'm feeling quite good. I did lots of physical work yesterday and am feeling no after effects today. On 7.5mg now. This is my 2nd go on the lower doses so fingers crossed.


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