New year, new hopes & new goals

New year, new hopes & new goals

Hi everyone, are we all over the festive season? I am and back to normal :)

I am not to bad at the moment with the PMR though the RA is knocking me about a bit. The mTX does not seem to be doing what rheumy expected as cRP is still 26. When I was on higher dose pred I got it down to 14.

I reduced the pred yesterday by 1mg so now on 13mg per day. Got up this morning barely able to walk with swollen feet and painful knees and of course my hand and fingers to stiff to do anything. Not really sure if this is due to the reduction after only one day. It is probably more to do with taking my dogs a walk yesterday, I can't take together so 2 separate walks.

I have had a sore scalp for a few days which is driving me nuts but not sure what's causing it unless it's the MTX as it has made my hair thin so now on folic acid every day except the day I take the MTX and hopefully it will thicken back up.

I was hoping to go to a chemist in town today to get a hand/finger splint to help with resting my joints on my bad hand so might have to call on mummy again :( She is 70 this year and runs rings around me. I don't know what I would do without her.

Anyway, if anyone interested I am still doing the bags at £6 of which half is donated to PMRGCAuk.

I hope you all have a happy new year and all your hopes and dreams come true and your goals are in sight.

Keep smiling :)

Sue

20 Replies

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  • Sue8,

    Am interested in bag, anything to publicise this problem of ours! Let me know more details please. Thanks.

    On the subject of folic acid, does it really work, think I'm getting to the stage of needing some help.

  • The pic above is of the bag one side then on the other is a small square logo in bottom corner. You can then have your name hand embroidered if you wish in whatever colour you wish. You can either use paypal to pay me or send a cheque or even online bank transfer. Itis £6 for the bag plus £1 p&p

  • Sue8,

    Will go for it. Can you get your details to me securely? I thought we shouldn't post personal details ie email address etc on public forums.

  • I have sent you a message on here only you can see it. Go into messages at the top

  • Yes - the messages function in HU is really useful for contacting people without anybody else being able to see.

  • All the best Sue8 for a healthier, pain-free New Year. You keep going so well in spite of all the trouble this wretched illness causes. x x

  • LOL, I have to as I am one of the younger ones (49) I still have dependants to look after and home educate.

    Today for some reason the tops of my legs are painful and its hurting to walk about so a quiet day here today.

  • The thing I find so exasperating about this illness is that people who don't have it just don't understand how it can affect us. For instance, when I am having a bad day with lots of pain, say in legs and hips, and I have to take it easy, close relatives think I'm being lazy and when they see me on a better day being able to do more they think it's vindicating what they thought in the first place.

    Maybe we should make it mandatory that they all read forums like this, maybe they'll be a little more understanding.

    Anyway, Sue8, hope you have a happy and less painful 2013. Got to finish here, pain starting up in my shoulders......does it ever end? :-)

  • know what you mean about the good and bad days. I have a 20yr old and an 18yr old still at home along with he younger 2 and they just let me carry on even if it is obvious I am in pain. Today I have been stupid, I am sick of looking at my patios and block paved path thus causing the dogs to be dirty and smelly. So me being me decided to jet wash. I have done the vast amount of it then came in for a bag. I told my 18yr old he should be ashamed of himself watching me do this and I wondered what his dad will say once home. 5 mins later he comes out to tell me he will finish it off. Now I know this is only because of what his dad will say and not in fact helping me out. My left hand is now distorted so got to let the swelling ease. In the mean time though my 13yr old with special needs has prepped all the veg for dinner.

    Hope your shoulders ease, I get the same if at the comp to long.

    Gentle hugs

    Keep smiling :)

  • Hi Sue,

    So sorry you're having problems, but you seem to be suffering rather like I was on what I called the teen doses. I was dropping 1mg every 3 to 4 weeks and using ibuprofen to help, but it was a real battle. I'm on 9mg now, hoping to drop to 8.5mg in a weeks time. I've had PMR for just over 2 years now, but I can promise you, I'm getting much better. Although I get stiffness at times, I have very little pain now and my energy levels are well up.

    Don't despair! Try to go slowly with the drops and pace yourself as much as you can. We're all so good at that aren't we? Noooooooooo! are we heck, especially me.

    Can't you make a little list of jobs that need doing and delegate them to your older kids? You really shouldn't be doing heavy outside work like you are Sue. My back yard looked disgusting for months, but, as my partner was too busy to clean it, I left it until I felt better.

    By the way, I too had a sore scalp for quite a time, but it eventually went away so don't worry. Maybe it happened because my skin became a little more fragile. As with so many symptoms, who knows.

    I'm pleased to hear your mam is there for you. She sounds wonderful.

    All the very best to you and your family in the coming year!

    Pats.

  • Thanks Pats.

    I went down 1mg pred on Monday. I am now down to 13mg per day. I am not looking forward to Friday as I have noticed 4 days after reduction I have symptoms like a flare that lasts about 3 days til my body is used to the new dose.

    I am still waiting for my appointment for next rheumy visit. I am suppose to be going first week of March but apparently they are waiting for more clinics to be added but assure me I will be seen in March. I do hope so as this MTX needs sorting as not seeing much improvement with it.

    I have increased my folic acid this week as my hair was going thin and coming out in handfuls. I was on 1 weekly then 3 per week now on 6 per week with permission from my nurse.

    Had some good news this year already, I have finally got my doc to give me the testing strips and lancets for my blood glucose monitor on repeat prescription. Type 2 diabetics are said not to need to test as we have 3 monthly hb1ac tests. But with all my meds my levels were in double figures and now on 2 meds for the diabetes so I argued I needed the test strips that have been costing me £25 a pot.

    Sue

  • Hi Sue,

    Just a little 'add on' to my previous. MTX as you call it. I wonder why you were given it. Was it because of your diabetes? I know pred is sometimes the cause of this illness in those who do not have it previously to PMR. I have done some digging into research done in the USA mostly regarding the use of methotrexate for PMR. It seems that patients can reduce pred more quickly when taken with metho, but it does not reduce the incidents of flare-up and it would never be used as a first choice for these two illnesses. It seems to be given to those who cannot tolerate pred and have to be reduced quickly. I guess you must fall into that category. Sorry Sue, if I have caused more worry for you, but, as you have said, your inflammation is not reducing as expected. Perhaps a serious talk with your medics is needed. By the way, it can take a few days for the side effects to flare after a drop, but don't let it go on for too long.

    Pats. x

  • Hi Pats

    I was given MTX for RA. I was diagnosed with RA on Oct 23rd 2012 by rheumy. They have said if my CRP does not drop soon they will have to think about injections of MTX that will work better than tabs. I am due back in March but no appointments available so they are waiting for more clinics to be added. I had diabetes before PMR and pred but the pred has made my sugar levels worse and now on 2 meds for the diabetes to stay under control.

    Today is day 4 after reduction and as expected I am not good. The right side of my neck is swollen, feet swollen and knees hurt. I will be adding ibuprofen to my breakfast this morning lol.

  • Hi Sue,

    on the subject of methotrexate, there's an interesting post regarding it's use and effects written by a lady called Margaret Wright on the PMR-GCAUK North East Support web site. If you have time to read it, it's quite reassuring. I do hope you pick up soon!

    Pats.

  • hi is enyone having neck pain all so very bad hip pain thanks floramay

  • Hi floramay,

    I have had PMR for 2 years now - on 9mg pred at the moment and feeling so much better. However, I do get all sorts of pains on and off and wonder whether it's the PMR or side effects of pred that are the cause. The main triggers seem to be over doing things or, sometimes, laying in bed too long. The major pains of PMR seem to have gone, but I do get stiffness in my muscles if I stand for long periods without moving about much, as when cooking a meal.

    If you are still getting the pain and stiffness of PMR then pain can radiate to various parts of the body such as the neck and hips.

    I have also experienced pain in my knees, elbows and hands whilst recovering, but all the discomfort has mostly gone now and on many days I feel quite normal again which is wonderful.

    Pats.

  • Floramay -No neck pain for me but definitely bad hip pain.

    Sue8, - was wondering if you could share how much Folic acid you are on , I am on 1,600mg, but have only been doing this for 2 weeks, I noticed I am not losing as much hair.

  • WOW I am on only 30mg I take 1 5mg tab every day for 6 days a week as can't take on the same day as MTX though not sure why.

  • I am interested as to how everyone gets on with PMR. I have no symptons since taking prenisalone, but they are filthy tasting as I am not on the coated ones. (too expensive, I suspect!) In addidtion I celebrated my 84th (Christmas Day) birthday by going to the hospital at about 11p.m. diagnosed with a heart attack!! I was kept in for four days and had a recording device fitted in my shoulder by the cardiologist. My feet and ankles have swollen badly, but today was my first day of going out. I had to wear my walking boots, as I couldn't get into any of my shoes! Anyway, Good Luck to all of you and a belated happy new year! - Jean

  • and a belated very happy 84th birthday to you Jean. I hope you are now recovering from the heart attack that must have been very scary.

    I don't have the coated ones cos of my diabetes but I don't taste them at all. I chuck them in the back of my throat and drink milk. I take 6 tabs at the moment and put 3 in at once.

    Happy new year to you

    keep smiling :)

    Sue

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