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
Anhaga elizabeth40672
Posted
Can you explain what happened when you said "all my medication went to pot"? It seems like you had been doing well until then.
What illness is Simponi (golimumab) treating?
You must not come off steroids too quickly as you know because your adrenals may not, after several years, wake up as quickly as the doctor appears to think they will.
Ginger is a proven anti-inflammatory. Turmeric seems to work well for some, not so well for others and I believe is actually contraindicated in some cases, although as far as I know there are no interactions with pred.
Take Vitamin K2 (not K1) along with the other supplements I hope you are already on, especially D3, as it directs calcium to the bones.
elizabeth40672 Anhaga
Posted
Long story but I will try and explain I started Humira in July 2018 and was at that time still reducing steriods using the DSNS method. The was for the diagnosis of AS (axial spondyloarthropathy) as the specialist thought the doctors diagnosis of PMR was wrong due to age. By October 2018 I was down to 5mg.
I stupidly decided that in order to take only one Humira injection with me I needed to take one the day I left and then another one whilst I was away. This would leave me with 17 to my next one when I got home. So from October I started increasing the days between my injections from 14(recomended) to up to 17 days. By the time I went on holiday in February I was already not feeling great and had decided to go back up to 5mg. It was not holding the pain at bay but it was ok.
I got to the 14th day of my holiday and my injection did not work. Instead of going to the doctors I chose do nothing and remain on 5mg and wait till I got home. Since then I have slowly got worse and worse. I was hoping that the Humira would kick back in but it didn't and I had to wait until June for a specialist appointment. He then did another MRI and took me off Humira and on to Simponi (golimumab) for AS. I am now waiting to see the specialist again, hopefully in September.
However, I have been told by a nurse that the MRI says I don't have AS! but have to stay on this medication until I see the specialist again. I have been told to get off the steriods as they are making my Oestoperosis worse. This was confirmed with a DEXA scan and so they put me on Alendronic Acid. I am also on AdCal.
So it was all my fault but am now really paying for it and have no idea what to do or who to see.
EileenH elizabeth40672
Posted
You aren't too young - the latest declaration by NICE in the UK says "over 40"!!!! And anyway it has been over 50 for some years.
If you h ave osteoporosis - rather than removing the drug that worked, it would make sense to add something for bone density (but I'd like to know what your t-scores for the dexascan were, being rather sceptical I don't believe everyone who claims we have osteoporosis!)
elizabeth40672 EileenH
Posted
Hi Eileen, good to hear from you 😃
I don't have my latest test results that apparently say I now have Osteoporosis in spine and both hips now. But my score in 2017 which was classed as 'significant Osteoporosis' and my score at that time was T -3.4 and Z-2.7. Not sure what that really means but hearing that it is now Osteoporosis in hips too now has driven me onto Alendronic acid.
dennis55149 EileenH
Posted
From the Pred I have osteopenia and am taking 4,000 IU Vit D and Calcium.
And I have a reclast infusion once a year.
Anhaga elizabeth40672
Posted
Please google healthunlocked my osteoporosis journey. This is an account of what I did and you may get some useful tips about how to manage your bone thinning. It may not just be the pred which has affected your bone density. I believe the biologics you're currently on do help with bone density, so if you are still experiencing a decline there may be other factors at play. Have you been evaluated for secondary causes of osteoporosis? One thing which seems to crop up relatively frequently on the bones forums is issues with the parathyroid glands. If a secondary cause like this is not treated then no medication or exercise regimen is going to help. Just a thought.
Even if you opt to continue with the bone medication it will also be a good idea to do all the other so-called natural things as that will have no side effects except generally improved health!
elizabeth40672 Anhaga
Posted
Thanks Anhaga. I have had my thyroid checked is that the same as parathyroid? That all seems fine. I will check your google link. It will be really useful as I am currently looking at my diet to see if I can help myself.
elizabeth40672 Anhaga
Posted
Hi Anhaga I have tried googling "healthunlocked my osteoporosis journey" and not found anything. Can you send me a link please?
Anhaga elizabeth40672
Posted
will private message
Anhaga elizabeth40672
Posted
No the parathyroids are called that only because they are next to the thyroid, they are different.
EileenH Anhaga
Posted
https://healthunlocked.com/pmrgcauk/posts/137578304/my-osteoporosis-journey
and as Anhaga has said - parathyroids and the thyroid are adjacent but different.
elizabeth40672 EileenH
Posted
Hi Eileen I just wanted to give you an update and ask for your advice again. I saw the Rheumy yesterday who again says I don't have PMR as I'm too young and the pred did not get rid of all the pain. I said about 80% better. Apparently it would make me 100% better if it was PMR! He is now not really sure if it is AS either as I don't have pain in my lower back and my latest scan just shows general wear and tear in my lower spine. He is going to scan shoulders and hips as that is where the worst pain is but I don't believe it is going to show anything but will do it because he is finally taking an interest.
However he has agreed that I can go back on an increased does of steroid. I'm currently on 2mg which is doing nothing. He only wants me to go to 15mg but I feel that this wont be enough at this stage. I want to blow the pain out of the water so personally want to take 25mg for the next 7 days and then reduce to 20mg and it I'm ok there take it down to 17.5 and then 15. Probably over a matter of a month, depending on how I feel. Does this sound like a reasonable plan? or should I do as he says and start at 15mg? I'm at the stage that I need to get it back under control and don't want to mess around with a level that might not work and I want some form of life back quickly. What do you think?
EileenH elizabeth40672
Posted
He is wrong on both counts and you need a better rheumy. The result looked for with the starting dose is about 70% global improvement in symptoms within 1-2 weeks - and it isn't going to happen unless the starting dose is high enough! Do try 15 or 20mg first - just to see. When a flare happens because of slightly overshooting the dose - and 1mg too low is plenty to let the inflammation build up over time - adding 5mg to the dose where the flare happened is often enough. If you can get a result with 15mg it saves all that agony of reducing! But don't rush - that is what leads to the problems in the first place.
But above all - new doctor ...
Michdonn elizabeth40672
Posted
Elizabeth, only three years on my PMR journey, but experienced a very bad flare had to increase my prednisone from 7 mg to 30 mg to get relief in dribs and drabs, just a little at a time now I understand the best thing to do is to get ahead of that inflammation and get it under control QUICKLY! Good luck 🙂
elizabeth40672 Michdonn
Posted
Thanks Michdonn! I have been in such pain and waiting on the Rheumy to say it is ok. Dr wont prescribe steriods without his say so. It is so frustrating! Anyway, I took 15mg this morning and already feeling a slight improvement. Hoping that with more tomorrow I might be getting some life back. I have been in agony for nearly 3 months and that is just unfair. Onwards and upwards.
elizabeth40672 EileenH
Posted
Thanks for the advice Eileen! I took 15mg this morning and already I am walking a little more freely. Hope to feel more improvement in the next few days. Not so easy to change Rheumy as I live on an Island and have to wait for them to visit. I will just have to educate him... 😃
Michdonn elizabeth40672
Posted
Elizabeth, I have had a battle with my Rheumy, she threatened to fire me as a patient more than once, but after bringing in articles from the forum web site, she finally let me control my medication, I now see her every 4 months or so. The pharmacy calls in my prescription renewals. I have basically managed, with the help of the forum for the past two years. Many doctors think they are Gods, they are NOT you know your body better than them, learn to listen to your body. Get control stabilize the inflammation, no reductions if any PMR pain. Once again Good Luck. 🙂
Silver49 Michdonn
Posted
Yes, that's the trouble with some doctors. They do think they are gods. I have found that they are the ones who probably know less than their colleagues who have the confidence to include their patients in their consultation. They are often very narrow in their outlook and are textbook orientated. Heaven help all of us who are outwith the textbook scenario. I think this attitude is changing with a younger generation, thankfully.
elizabeth40672
Posted
Wow last night was bad again (I know I am expecting a miracle!). Woke at 3.30 and gave up at 4am and came down stairs. Managed to hold out until 6 before I took 15mg steroids. Hoping today and tonight will be better. The sun is shining at least 😃
EileenH elizabeth40672
Posted
That is early in the night for PMR pain - but also a sign that MAYBE the 15 isn't quite enough and that the antiinflammatory effect doesn't go the full 24 hours for you. Time will tell. When did the pain start - was it bad by 3.30am?
ptolemy Michdonn
Posted
There was this guy in a hospital rushing about and ordering everyone around. Someone asked "who on earth is that" the reply " Oh that's God, he thinks he is a doctor!"
elizabeth40672 EileenH
Posted
It was bad by 3.30. I went to the toilet and did go back to bed but it was so painful. The other nights I have taken 2 co-codamol and I didn't last night. I am feeling a little better after a couple of hours once I took 15mg so during the day there is some relief. Maybe I was just expecting too much on my first day.
EileenH ptolemy
Posted
Then there was the queue at the Pearly Gates which wasn't really moving on. A doctor who had just died was getting a bit testy, after all he was a consultant and a big name in his field so he expected a bit of priority treatment. Suddenly a guy in a white coat and a stethoscope hanging round his neck walked up, past the queue and someone jumped to open the gates so he could go in.
When the doctor got to St Peter he asked what this was all about - how was that apparently junior doctor more important than he was? "Oh, that was God. He likes to play doctors ..."
ptolemy EileenH
Posted
love it!
Michdonn Silver49
Posted
Silver, you nailed the Rheumy I have, who is not keeping up on PMR, has the God complex. She back off me after one of the papers I showed her the was contradicting her was written by one of her professors. We have to be responsible for ourselves. 🙂
Silver49 EileenH
Posted
That's a good one.
Silver49 Michdonn
Posted
I've worked with some of them and have sorted out one or two in my time. As I said to one, we all come in to the world the same way and we'll all go out the same way. You can't circumvent it. The fact that I said it stopped them in their tracks..... momentarily.
EileenH Silver49
Posted
I went to uni with a load of them - seen them legless. There are good ones - but plenty of the arrogant sort. Which might have a bit to do with a similar educational and financial background to some UK politicians ...
Silver49 EileenH
Posted
A very good analogy. I think it has changed to a degree but I suspect it may be going back because of the change in grant funded students who leave with debt if there's no bank of mum and dad. It's depressing to think it will be a retrograde step. We need a good mix in any profession.