Has anyone else read ..PMR why me ?

[trish29]

Hi has anyone else read this book ? It only seems to be in kindle form which I downloaded from Amazon.. It's excellent .. Kate Gilberts book on PMR/ GCA is my favourite book and I have it near me all the time but this book by Bren Ryan is excellent .. It was just like reading about myself and my PMR journey and I need to tell some of my Family and Friends to download it and then they might understand me and what I am going through a bit better . The Author is a PMR sufferer and I am wondering how they are getting on since writing the book .I have had nearly 11 years on this PMR road and this is a New Year with another new beginning ..I am back on Methotrexate to try to reduce on the steroid as my body is very stubborn and over the years I have had lots of hurdles ie Flare ups for different reasons , at the moment I am stuck on 14.05 mg steroid but I was up as high as 17mg before Christmas due to a fall .I put the fall down to starting the Methotrexate injections and it was a steroid reduction day. Luckily I have a very kind and caring Rheumatologist and I had a more positive meeting with him yesterday . We are going to continue on the Methotrexate injections but he has reduced the dose slightly because of the muzzy heads and giddiness .. I was on Methotrexate before orally but I had to come off of it because it effected my liver. The 1st positive note for the New Year was I hadn't put on any weight which is good seeing as we have had Christmas and lots of Birthdays. So I will continue to fight this horrible condition and Thank You to everyone on this Forum who gives us fellow sufferers lots of advice and to the Authors of these books which we can read and get comfort from ..best wishes. trish 29

[Angela123]

Thanks Trish. I'll have a look at that. Good luck with your MTX injections. I hope they help. Angela

[trish29]

Hello Angela123.. I hope you enjoy the book as much as I did .. We all have different journeys and there is a bit about hospitals in the book, and I have been unfortunate at some of my Early hospital treatment but not with the Rheumatology team that I am with now. I do wish my GP was more understanding but I try to get advice from my Hospital team and only go to my GP for my blood tests or anything away from PMR even though I know he has other PMR patients ..I am just complicated apparently.. I enjoyed the book because it described how ill I can feel and so much is still expected of me even though I do have a kind and caring partner and family , but they get fed up because I always feel poorly .. Take care trish29

[daphne_retired]

Hi Trish,

Dorset Lady has been talking to me of the Gilbert Book, and I am ordering that one. Let me know how you get on, as it seems to me that I may have been a PMR sufferer for years, as when I read the PMRpro links that he sent, it all fitted. The rheumy that I was sent to was not interested in anything but Rheumatoid when I was using them. That was in 2008. No medication for me, though. Just perserverence and struggle throug all the pain and immobility. I have a friend who I met with RA (supposedly), and was put on Methetrexate and shortly after had liver failure. Survived thank goodness. All her symptoms agree with a PMR diagnosis as well. PMR has never been mentioned to her over a ten year struggle. This forum is very interesting, and so infomartive.

Thanks for this post, D

[trish29 in reply to daphne_retired]

Hi Daphne retired I am pleased you read my post .. In the beginning of my PMR journey i went to and fro to hospital for a long time for tests but no answers but it was thought that I had RA until I was seen by a Registrar who said not but thought it was PMR ..I have been through yes it is PMR and then no its not pmr but after a long time and numerous visits to appointments I was told well yes it is and it will fizzle out within a couple of years or so,and here I am nearly 11 years later still struggling .. If I had the Rheumatologist then that I have now who on our first meeting had no doubt that I had PMR .That was about 18 months ago , I think the PMR would be better than it is now .. I am just so upset that I can't walk but I don't give in ..on my bad days I shed loads of tears and myself and my partner are finding out that the Methotrexate is making me very agitated ,I get really cross and upset at the slightest thing ,but I must continue with these injections .Please keep in touch as I think you are very brave with no medication ,my pain level is so high at times but I find the only answer is rest which isn't always possible but I always feel better after a rest . I also have a lovely neice in her early 50s who has been treated for RA as well as surviving Breast Cancer who has just been told that she now has PMR and is in Methotrexate. The problem for the Medics is that RA and PMR are so simalar ..I was told i didnt have it because i didnt have swollen hands .i have Osteoarthritis . It is so hard to cope with this pmr condition and for me the exhaustion wears me out but I love to keep up with this forum and the regular sufferers that post on here to find out how they are getting on .. I live in Surrey and the sun is shining beautifully this morning and Spring is around the corner so maybe there will better days ahead Best wishes. trish29

[daphne_retired in reply to trish29]

Spring is one happening that really helps me Trish. Yes, immobility and its flares have caused me many a tear. I have two sticks, a 'walker' with four wheels, and have used a wheelchair. However, I have always made a good recovery and at present need no aid. When mobile, I exercise. Neck, lumbar, hands, wrists, feet and legs. Nothing excessive, gently is the way. On the pain, I have studied physiotherapy and pain. The physio is always a great help and I always pay, as it is on another level to the nhs. £40 per session. Sometimes I can get this back as I am a carer as well. The pain I use mental therapy, mainly to focus on the pain and let my own endorphins take over. The secret I am taught is not to interrupt the neural pathways. Please note, in the case of GCA, none of these methods should be used and could be dangerous to assume they would help. I also work hard on my diet using Turmeric as the main anti-inflam. This is now suggested by many professionals on the auto-immune problems. Always the GP insist my problem is a variant of RA. I proved that my anti-CCP was normal, by forcing the GP to get a test at St Thomas's. RA positive and anti-ccp normal suggests another auto-immune problem. Lupus is considered. I prefer the PMR approach. This is the first time in my life (last week) that PMR has been offered as a diagnosis. That was by using this site. My hands and wrists lost their ability to workin 2008 for about ten weeks. Started slowly over a week or two (cannot pull up the sheet at night), and intensified to the extent that I could not pick up a spoon, wash my hair or clean myself. I was helpless except for walking and chewing etc. I paid for MRI-s privately and proved with the radiologist that there is no RA! Now this GCA something new, and I was completely ignorant on this subject last week. WHy, oh why did no one explain. The rheaumy and four different GP's since 2006 have never told me to watch out for it. Yes, I am cross. Thank goodness for the internet and this forum. Whilst I can type and see, at least I can become aware.

[trish29 in reply to daphne_retired]

Hello again daphne_retired ..you have certainly been through the mill and I hope you continue to improve .I have got very frustrated in the past for lack of information on things like Myofascial pain syndrome and vasculitis ,Bursitis .Its only through reading fellow sufferers posts on this Forum and going to meetings at the PMR/ GCA Group of Surrey that I realised that it wasn't just PMR .In the past I just thought that it would be easier to get off the steroids and didn't anticipate so many hurdles on the way..I waited nearly a year to get in with my present Rheumatologist and I think this year I could see an improvement and I have been with him a while now , he listens to me and we have tried every medication orally but I have a very sensitive stomach so most medications make me nauseous. This morning is my best morning this week and here I am due another Methotrexate injection at tea- time ..I am hoping to go out to lunch though .I am pleased you don't need any walking aids at the moment ,that must be wonderful .Like you I have a 4 wheeled walker and I also have a mobility scooter but I haven't always got the energy to go out with either of the aids . To help my pain I go regularly to my Osteopath who understands PMR because her grandmother has it and I have gentle ultrasound to my lower spine and knee and a light massage to my upper arms ,kneck and shoulders and then I usually come home and rest that day ..It is comforting to know that there is more research going on for PMR but any new medications for pain relief seems a long time coming .When I am in a lot of pain I always try and switch off and think of nice things ,be with my Grandchildren and think of my favourite places . I have always found lack of info about GCA from the GPs unbelievable because in the past I have had lots of migraines and Bloodshot eyes but luckily my Opticians are aware that I have PMR and I can phone them or call in and see them at anytime which is a comfort .. take care and best wishes trish29

[daphne_retired in reply to trish29]

Thanks Trish. Bursitis, oh, I have a lovely picutre of my elbow, which ended up as a few months of multi-coloured forearm and pain from the blood. Heh, that vasculitis, arm and foot and tummy, again lots of good pics there. Cluster of ulcerations in the roof of the mouth, and on we go, eh, girl? Never ending. So good to hear you and how we cope. My music is my pain relief. Works for me. We all have our way. (Otherwise we'ed go mad).

[Queenie10716 in reply to daphne_retired]

Kate Gilbert book on MPR & giant cell arthritis is a must read for everyone who has Pmr or a loved one with this condition. I wish I could write more but my hands are not happy. Rita

[fuzzybear]

Thanks for the heads up. I have just read the sample on Amazon Kindle and it seems that it documents her PMR journey but it also is so funny. I have signed up to Kindle Unlimited so can read it for free. Sounds like a really good read.

[panda12]

Thanks for the recommendation. I have ordered it on Kindle. Like you I have had PMR for a long time - 13 years and had a lot of flare ups. I'm now on 25 mg of methotrexate a week and have just taken my last steroid this week. (I hope). weaning off the steroids has been a very long journey. Good luck.

[trish29]

Thank you panda12 and fuzzybear for your replies ..I hope you enjoy the book..I find it modern and funny and so typically me at times ..wow panda12 you take 25mg Methotrexate ,doesn't it make you heavy headed? I keep telling myself that the day after the injection should get better as I get more used to them. I so envy you on 0 steroid . best wishes to you both .. trish 29