Back to square one
Posted , 15 users are following.
After seeming to get somewhere with this at the beginning of the year I now feel as sore as I did right back at the beginning of this journey in 2016 and I am now 51. As a recap - First the doctor said it was Polymyalgia and put me on steriods where I got relief to about 80% of my pain. Then the Rhumy disagreed and decided I has Axiel Spondoloropthy (sorry for spelling) as I was to young for PM and said because of my diagnosis of Oestoperosis that I had to come off the steriods and put me on humiura. I was slowly reducing the steriod and on the humiura and was doing well. Then I went away on holiday to New Zealand this February. It was fabulous but all my medication went to pot and I have not been good since. I changed Rhumy due to change of address and he now says that he does not think the diagognosis of AS is right and now insisting I get off the steriods completely, currently I am on 3mg, and has moved me onto Simponi which is injected once a month and may take 12 weeks to kick in. I take my 3rd injection on Saturday.
Where I am at now. I am in constant pain in my shoulders, which runs down my arms with certain movements. I find it difficult to put on my clothes or tie my hair up. My neck and upper back are painful too. My hips are in a bad way and it hurts to walk up the stairs or to crouch down. Sleeping is only on my back as any other position really hurts. I take co-codamol to help me get to sleep, I don't think it helps the pain it just relaxes me so I can drift off. I do get to sleep and often wake in the night but try to go back to bed but if I move I wake in pain. When I am up and moving is better and I work which does take my mind off it a little.
Ok so what is my question. I need to get my quality of life back but don't know what to do about it. I am waiting to see the Rhumy again I hope in September where I think I will be telling him that Simponi does not work. He will then try me on something else that may take 12 weeks to work, am I just supposed to put up with this pain for another 12 weeks and on, whilst we go through all the different drugs? What if it is PM and steriods are the only solution? How can I prove this? If you were going to be sitting in front of the Rhumy soon what would you be saying?
I know there are lots of you out there who are much worse than me and I thank you in advance for your support.
0 likes, 54 replies
sandy08116 elizabeth40672
Posted
That's sad. After being in denial that I won't get PMR - it happened. Within six hours of taking initial prednisone - all pain disappeared. Thought I was wonderful!!!! Three weeks past, last night got severe shoulder and upper left arm pain - like shoulder was dislocated and punched in the arm. Phoned doc and asked if I could go from 10mg to 15mg and he said it wouldn't do any harm. Let's see what happens tomorrow. So different in management from GCA.
Glad you liked your trip here. Keep well, Elzabeth.
Silver49 elizabeth40672
Posted
What a difficult time you are having. You have all the symptoms of PMR that I experienced and steroids are the answer. Surely the side effects can be managed. I had an ex colleague the same age as you who had PMR. You are not too young. Has your Osteoporosis become worse in the time you've been on steroids? Can you discuss all this with your rheumy? Best wishes
elizabeth40672 Silver49
Posted
yes it has ☹. am now on Andronic acid for that too now...
Silver49 elizabeth40672
Posted
That must make it more difficult when it comes to decisions on steroids. I don't know if I have any problem as I had no scan at the beginning and I had to stop the calcium as it was affecting my heart rhythm. I'll just have to ensure I don't fall to find out. I hope Eileen will come along with an answer soon.
bob03667 elizabeth40672
Posted
Ditto on what others have said. Your symptoms were exactly what I was experiencing at my worst point. When my doc was first unsure about it, there was a two weeks Prednisone prescription that was to see if my symptoms were lessened almost immediately which they were in my case.
Almost one year later, I still have shoulder pain which is much worse at night and when I first get up and some hip pain going up stairs.
dennis55149 elizabeth40672
Posted
Boy I'm no doc but it sure sounds like PMR. I'm sure you had your Sed rate and CProactive blood work done? If so do you know what your reading were? I had my first PMR at about your age and have had two relapses and Pred worked perfectly and got off pred within 6mo.
elizabeth40672 dennis55149
Posted
I don't think I have had my Sed rate or CPoactive blook checked in a while although I am supposed to have regular blood test. I need to arrange another one so maybe I ask for that to be added and then at least I would know. The reason I was first diagnosed with PMR was raised inflammatory markers. Thanks this is the beginning of a plan 😃
alebeau elizabeth40672
Posted
You said you are taking humira right?
That is a scary drug that can actually cause joint pain among many other much more scary things, check it out for yourself.
I am 70 and have had PMR now for going on 10 months, now at 13 mg and finding it hard to reduce. Pain killers in the morning help as mornings are the worst time for me. I feel like a Jeckyll and Hyde every day.
My rheumatologist has suggested Methotrexate to aid the Prednisone but I refuse outright based on the terrible side effects.
I am very sympathetic to you as you are so young.
Diet is very important so pay close attention to foods that are inflammatory and try taking turmeric and ginger on a daily basis as they are both naturally anti-inflammatory. I mix a them with a bit of cinnamon in a tall glass of Almond milk 2 or 3 times a day, every day! It is important to keep it going.
Best of luck to you
elizabeth40672 alebeau
Posted
I stopped Humira about 2 months ago but was put straight onto Golimumab, similar kind of drug I think. I will check out the side effects of this one too as it may be the cause not the cure!
I am currently looking really closely at the diet too as I decided I needed to see what I could do for myself. I take Turmeric but not Ginger so will give that a go. And your mild drink sound ok too. Anything is worth a shot.
Trying not to grumble all the time but boy its hard! 😃
ptolemy elizabeth40672
Posted
The thought of being stuck with PMR type pain again frightens me no end. I think I would tell the rheumie that pred helped you. Can you increase your steroid dose and see if things improve?
elizabeth40672 ptolemy
Posted
I have a box of 25mg in my draw. So tempted but fear that taking them without permission may compromise my relationship with the doctors/specialist. I know it sounds mad but maybe once I have had my injection of Simponi this weekend and then have a blood test I can make a more clear choice.
It is tough though!
ptolemy elizabeth40672
Posted
Could you make a phone call to your doctor and say you are upping your dose a bit? It does seem we have to be very proactive or we are just left in pain. The trouble is most of us don't like to complain.
elizabeth40672 ptolemy
Posted
I agree! Will do it on Monday 😃
Flutterbie57 elizabeth40672
Posted
Don't be afraid to upset your Doctor. I accidentally upset mine for upping my dose when I was overseas, and having a flare up. Because of this I did finally change Doctor after 5 years and what an incredible unbelievable relief it has been for me . I got more help and support from a new Doctor in 15 mins than I had got for 5 years in a different practice. We live with the belief that Doctors know all, but in reality my old Doctor and my new Doctor are worlds apart in their beliefs.
elizabeth40672 Flutterbie57
Posted
I started on 15mg on Saturday and feel 40% better but not as good as I should. Tried upping it to 20 yesterday and can't really say there has been much improvement. Will give it a couple more days but if this is not helping then will probably start lowering back to 15 again. They are going to do an MRI on my shoulders and hips in a couple of weeks time so maybe get some more answers after that. I am trying to keep moving and walking but it is hard... Trying to stay positive.
EileenH elizabeth40672
Posted
If you are only on the 20mg for less than 10 days you should be able to drop straight back to 15mg.
However - although they say often say 70% better in a few days to a week, that only works if the dose was high enough in the first place. Many people never get total relief - so don't expect perfection.
elizabeth40672 EileenH
Posted
Is it worth trying 25 if no improvement before heading back down? 25 was my original dose in 2016.
EileenH elizabeth40672
Posted
If you needed it then - you may well need it now. And sometimes even with your original starting dose it is s a struggle to get a flare under control.
elizabeth40672 EileenH
Posted
Thanks Eileen I will monitor and see how it goes.
Michdonn elizabeth40672
Posted
Elizabeth , I started on 20mg and had to go the 30mg to get relief and stay there for 6 weeks before I was PMR pain free. I been tapering ever since very slowly for over 2 years. If I would have to do it all over again I would still take as much Pred as necessary to be PMR pain free! 🙂
elizabeth40672
Posted
Hi Eileen, I am feeling so much better! I did 4 days on 15mg as suggested by doctor, went up to 20mg for another 4 days and the relief was about 80%, hips and legs began to feel almost normal so I did 5 days at 25mg and now only have a sore shoulder on one side. Mobility of my shoulders is still not great but not in constant pain. I have come back down to 20mg to see what happens and am still ok 2 days in.
This is where I need your help. What do I do next? Do I stay at 20mg or start trying to get slowly back to 15mg...
Thanks as always!
Elizabeth