Will I ever get better?

[trish29]

Trish 29 asking will I ever get better? 8years of this horrible condition.PMR . I could not get the energy to go out today. Pain level high , medication including (15mg prednisolone) making me feel like i'm on another planet . I'm trying to keep smiling so as my partner won't have to put up with me having yet another bad day but I end up in tears for most of the afternoon !! Is there really other people out there feeling the same? There must be some hope somewhere of getting to the end of this very long tunnel. Best wishes and pain free days to fellow sufferers trish29

[polkadotcom]

Trish29, you have all my sympathy. I think I'm coming up to my 12th anniversary of my original diagnosis (I only think so, can't be bothered to count) and if you have 8 years on the clock you have even more of my sympathy.

You do sound very depressed, which isn't surprising. Have you talked to your doctor about this? There are now a surprising number of things which might help. Anti-depressants are often the usual solution and they worked for me but that was in the early days when such things as pain clinics and counselling, distraction and positivity techniques were not available.

I truly understand where you are - please take just one step in the right direction.

[trish29 in reply to polkadotcom]

Thank you polkadotcom for your kind comments. My GP is aware of how I am feeling and doesn't want to give me any other medication at the moment as I am due to see a new

Rheumatologist next month ,I have waited for a long time for this appointment and wonder if I can get on a new plan for coming down on the Prednisolone. I have had Antidepressants in the past and they only gave me migraines plus of course they are habit forming. I have always tried to be Positive with this condition and to take my mind off my pain etc I knit, crochet ,read and do Puzzles on top of normal routine jobs. I have always been a very active person but now I struggle to walk I go out on my mobility scooter if energy allows. Best wish trish29

[2watsons]

OSo sorry now on 6mg after a year ,when i was on high dose ,i felt so tried just wanted to stay in bed see no one,i love life and wondered what was happening to me,so ,well now much better ,so with luck will hope feel better soon ,always maybe worth visit to Doctor,

Hope soon feeling better ,too young for just old ladies like me get .

[trish29]

Thank you 2watsons what you describe is how I feel most days and today was a bad one .

I have to have blood tests done next week before seeing the Rheumatologist next month. I am due to go on Holiday in a couple of weeks time so maybe the change will do me good. Some sunshine would be nice. I don't think I'm as young as you think I am don't let the 29 fool you !! Thank you for being so kind I was so desperately blue today. It's nice to know there are lovely people on the forum. Best wishes trish29

[Maggieart in reply to trish29]

I have been miserable for weeks. I have suffered with pmr for 4 years. I was down to 4.5, but finally caved in and upped it to 7 for the last 5 days. I was able to do it after hearing all the stories that sometimes the increase is necessary and I shouldn't feel like a whimp! Well, it seems to have worked because today, even after 6 hours at work, I feel pretty good. The holiday will help so much. Sun!!!!

[ritter]

Hang in there trish29 ,I have been so ill the last 8 months I could have done some drastic things i do not know how we get through but with the help of us all we will make it to the end of that tunnel,I,v had constant pain in back due to multiple fractures in my spine and multiple embolisms in my lungs and the GCA, lots of medication all fighting with each other and been in hospital 5 times in the last 3 months, I know exactly how you feel, this holiday will do you good,try and forget and enjoy.good luck trish29 and keep your chin up.x ritter Anne

[trish29 in reply to ritter]

Thank you ritter Anne, you have been through the mill and I wish you better times. I feel so selfish when I moan especially for my wonderful partner who does everything to make my life easier for me but between the pain and the muzziness of the medication you can't always cope and don't understand why you can't get better. I just hope tomorrow is a better day. Thanks for your support and take care trish29

[suzieh]

Hopefully an early night and a new day will begin in a better way for you. Try making some lists of what to take on holiday - you can pack easily then when you are feeling better. Hopefully you are going to get some sun - it always makes you feel better. Just a thought have you had your Vit D levels checked? Low levels can make you feel depressed and ill. I have had mine checked recently and they were ok - my Dr said nearly everyone she had checked recently had come back low - apart from me! It is a common problem which can be easily treated. My mum 88yrs old has low levels - Dr told her to strip off and sunbathe (without sun cream for 15mins per day whenever possible ) Luckily her garden is private!! She also takes supplements and is starting to feel better.

[Celtic PMRGCAuk volunteer]

Trish - hang on in there, it isn't long before you see a very caring and experienced rheumy now for that well-needed second opinion. Hopefully, and I have my fingers crossed, you will wake up to a much better day tomorrow.

[Hidden]

Hi trish,

My heart goes out to you - I too have had so many low days in the past, but my lovely rabbit, Lewis, was always there for me, when my partner had gone to work, and I had to get up to feed him and clean him out. If I was late he was very naughty and would hurl things around making lots of noise. Hard as it was, he kept me going.

As I began to recover earlier this year, he died and it nearly broke my heart. I was left feeling so alone for most of the day.

Looking back at your first blog, you mentioned being on Ramipril at 10mg. My G.P. put me on the same drug at 5mg per day and on day 5 I could not get out of bed. I had awful pains all the way down my arms and legs. These pains took 5 days to go away. This happened before I developed PMR. I can't imagine what I would have felt like with both lots of pain - horrendous I think. I wonder if you are still on this drug or, if not, there is some other drug causing all the pain you are in.

I wonder just how your illness was handled from when you were first diagnosed to now. It may be that a comlete new approach is called for.

Suziah's right about the sun, but as we see it so seldom, I take vitamin suppliments and recently, I have upped my vit C intake as well as it is a good anti inflammitory.

I love pottering about with my plants, both in the house and outside in my small garden, and as I think that pets can be very helpful, my partner and I are thinking of getting a dog - not for a while, but perhaps a 'rescue' dog. One that's no longer in the puppy stage.

Love Pats.

[trish29 in reply to Hidden]

Hi Pats thank you and Celtic and Suzieh for your kind comments. I am feeling better at the moment this morning but haven't taken my main medication yet. Its very interesting Pats that you have mentioned Ramipril ,it has been mentioned on the blog before and I've asked my GP many times to take me off of it. He is reluctant until I see my new Rheumy.(I can't wait).he did put me back down to 2.5mg but the pains are back in my hands and more pain generally so I've always felt that the Ramipril was not helping me. I have thought about taking l every other day as I take propranolol twice a day for Blood Pressure. I take vitc and calcium and vitD as well. My holiday will do me good by the River in Stratford -on-Avon plenty of Ducks to feed -i love it there and the thought of getting away has kept me going . I know what you mean Pats about losing a pet ,we lost a lovely cat Ben last year but we still have Katy kat - a pet is wonderful .like you I love my flowers and plants and my birds in the garden and next week lots of tennis to see me through to going away. Thank you all for being so kind trish29

[pennyw Administrator PMRGCAuk team member in reply to trish29]

Hi Trish29

Good to hear you are feeling a bit better.

I think the vitamin D and C is a really good idea.

I have found my energy levels have totally changed since I changed my diet to avoid all inflammatory foods. It is a bit drastic! However, I am never hungry and there are still plenty of good things to eat. I don't eat dairy, wheat, drink alcohol or eat tomatoes, peppers or aubergine. My GP says this is fine as he had already prescribed calcium tablets when I first started the pred.

Hope you have a great time in Stratford-upon-Avon. Lovely place.

Penny

[trish29 in reply to pennyw]

Thanks Penny,nice to hear from you . I don't eat tomatoes or peppers and aubergines as I know they have a high flammotory level ,I usually only eat wholemeal bread but I do take certain dairy products, usually semi-skimmed or skimmed milk and I like Activia yogurt ( only I a day) I try to cut down on tea and drink camomile but I do like my cuppa especially when I am low. Alcohol is usually a no no -an odd spritzer if I'm out or with the family ,I can't eat onions or garlic due to having a sensitive stomach much to my partners disgust as he eats it every day.

Over my years with PMR I have tried and tested lots of food and sometimes found out the hard way what gives me flare ups. I hope you get a dog my Pete would love one but we know we would struggle to exercise it. But like Celtic,s cat my Katy kat is a black bundle of fur ex Ferrell and she is the Boss. Trish29

[Maggieart in reply to Hidden]

get a dog, get a dog, get a dog

My Everett pulls me through every time.

[Celtic PMRGCAuk volunteer]

Pats and Trish

I, too, have a big question mark in my head about Ramipril. Towards the end of my annus horribilis (bedbound and in agony for many months with undiagnosed and therefore untreated PMR), all my pain had spontaneously resolved and I was feeling great. A renal consultant decided to switch me from a beta blocker (Atenolol) to an ace inhibitor (Ramipril) for my blood pressure, saying that it would be better for my sole kidney. My kidney function figures improved immediately but within less than a couple of weeks I developed the worst headache plus jaw pain, facial swelling, nausea, vomiting and weight loss. A GP stopped the Ramipril, suspecting an allergic reaction. A few days later and another GP prescribed anti sickness pills, and so it went on, including yet another GP, for a month, until a pharmacist researched her computer and hit on Polymyalgia and the linked condition GCA, which was then confirmed by the head of my practice and later by my rheumatologist, who agreed with my thoughts that although we would never be able to prove it, Ramipril could have been the trigger for setting off the GCA when PMR was probably still lurking in my body. I haven't taken any other BP medication during the 5+ years on steroids......until now, when just the tiniest dose of a calcium channel blocker, Amlodipine, has produced swollen ankles after just 3 days! Hey ho!

As for pets, and as an animal lover, I do so sympathise with the loss of your pets, Lewis and Ben - each time we lose a beloved pet I think I will cope better but I never do - they really do leave footprints on your heart as the little fridge magnets say. We lost our last dog during my bad year and hubby decided we wouldn't have any more cats or dogs as we were getting older, plus I was useless (he'd struggled to lift our ailing 5 stone retriever into the car on his own to get her to the vet), plus we didn't know whether or not I was facing being in a wheelchair for life at that stage. Many months later I found a lost and starving cat when out walking one evening, a little ball of black fur (she was feeding from a black sack left out for the bin men). My heart melted and I carried her home, called her Beauty, tried to find her owners (at the same time naughtily praying that no-one claimed her!) - she is now in charge but oh so lovable!

I look forward to hearing all about your new dog, Pats.

[Hidden]

Hi Celtic,

The new dog won't happen for a while - not until I feel as if I have really recovered. At the mo, feeling pretty good again, but still languishing on 7mg of pred.

Blood pressure tablets, now there's a subject. In the past my former GP was convinced that I had iffy blood pressure and prescribed one med after another and all of them made me ill. I bought a bp machine and monitored myself at home only to find my bp was mostly normal - not unacceptably high at all. I was the victim of 'white coat hypertention'.

I took Ramipril at a very small dose when I was on the high doses of ped, but mostly do not take anything and all seems fine.

The higher doses of this drug had such an awful effect on me that I am never allowed to have them again - this is written in big red letters across my notes at the surgery. The thought that this drug could lead to PMR is hard to take as nothing can be done now - too late!

Pats.

[kingharold11 in reply to Hidden]

I too am a sufferer of white coat syndrome. Last year after a series of three blackouts due to a horrible bp pill called doxezozin a cardiologist at the hospital told me to stop worrying about my bp, that it wasn,t bad after they had me on 24 hour bp tests every 4 hours. He said all my problems were due to overmedication. I am now on 25mg of Losartin and 50 of atenolol and my bp is fine except if taken at gp's or anywhere medical at home it's fine Wendy

[bluejaygirl]

Hi Trish,

I hope your not 29 as your name suggests! I am quite young at 53 for PMR and have had it for going on 3 yrs now. I am currently on 12.5 mg pred and methrotrexate once a week. I have had a couple of flares and am currently working down from 15 now. Good days and bad days. the Methrotrexate is new and seems to be helping me get off the pred. I wish you the best.

[trish29 in reply to bluejaygirl]

Hi Bluejaygirl - it's Trish and no I am not 29! I've just reached 67yrs and had PMR for 8 years . good luck with the methotrexate and your reduction . I've lost count of how many reduction plans that I have been on . I was on methotrexate in the past for a good while but I had to come off of it because it affected my liver. I've been on other medications including Azathiaprine again because of a sensitive stomach I had to come off of that. We are all different and I so envy the people that can take these medications and get down on the prednisolone. Maybe my new Rheumatologist will have a new plan for me. I am willing to try anything to get back to some sort of normal life for me ( and my partner). Good luck with your reduction and thank you for caring trish29

[tourdefrance]

Hi Trish,

don't know if I can help. Looks like all of us fellow sufferers can only tell you what works for us. I was an extremely fit 59 when diagnosed 5.5 years ago and was told 2-10 years would do it. I opted for 2!! How wrong I was. I have been up and down more times than I care to remember. Got down to 10mg 4 months ago then pain in hips, elbow and wrist became so debilitating it was back up to 15 and need to see a Rheumatologist. Depression drops in regularly, never had a day off sick and supportive family and work colleagues get me through. Also Hairy Bikers diet has taken the excess weight away which helps, and I gave up drinking, but forgot why so started again!! Whatever happens it is about our attitude to how we deal with it and the support we get. Laughter is definitely the best medicine........surround yourself with it if you can; it really is infectious. All of that really helps me overcome those down times.

I think being able to communicate with fellow sufferers also helps.

GOOD LUCK!!

[trish29 in reply to tourdefrance]

Hi tourdefrance- thank you for your nice comments. It's Trish 29 feeling better than the other day but we all get these blue days. Like you I was 59 when I was diagnosed with PMR. I have never heard of anyone being told it could last 2 -10 years. I've always been told by my medical teams that it will Fizzle and then told that I may have to stay on 0.05mg steroids for as long as it takes!! Like you I am up and down on the steroids taking 15mg prednisolone at the moment until I see a new Rheumatologist next month I am hoping that he can take me down a new reducing route , tapering the steroids as I go which I've been doing anyway since January this year after a big flare-up. My family and my partner are very supportive and some friends try to be but they just can't understand PMR. I must look into the Hairy Bikers diet!! My partner liked your comment about giving up drink and starting again ..it gave us a good laugh . I don't drink but enjoy an odd wine-spritzer on a special occasion. I agree with you that laughter is a good tonic ,not always possible with a high pain level, but I'm normally a happy-natured person , I'm happy when my grandchildren are around me . I will continue on this PMR path and wish you well. Thank you from trish29xx

[albatross]

I want to join in but I know I am going to get into a mess.

I have had pmr for nearly 6 years and been on pred. since the beginning. "My" gp lets me manage my own dose but the gp doing the repeat prescriptions keeps writing "REDUCE THESE". I have had 3 cracked ribs, 2 broken foot bones and a broken wrist all in the last two years BUT my bone desity is above average for my age (71). The second bone in my foot broke in sept. 2012, usual plaster and it was not right, whilst seeing to my wrist told them it was very still very painful, anyway aug. 2013 ct scan - bone spur. Day surgery nov. 2014, yes was a bone spur but break not healed so I had been walking around on a broken bone for over a year!

I was on 15mgs. went down to 12 1/2 and then 10mg. What I want help with is --- I am having terrible pain, (but not really pain it is more like a terrible burning) that keeps getting worse across my pelvis when I try to walk. The pain is unbearable if I don't sit down or get some support so that I can bend my back I am nearly screaming my head off or passing out . I have a compression fracture in my lower spine with three bulging discs and I am waiting for a hip and knee replacement so I don't know what pain is what !!! but i am also getting this burning in my thighs and upper arms.

I have had to buy a second hand wheelchair just to get around the house, as I live alone. As you said I try to keep smiling but it is the depression, lack of energy and just not wanting to move- although I have to!

I am on patches, co-cocodamol(30/500), naproxen and amotryptyline at night. Do I up the pred.? My love and thoughts are with all fellow suffers.

[trish29 in reply to albatross]

Hello albatross . sorry you have had a hard 6 year journey .. I don't know how anyone can describe our pain , we are all so different . I have been in unbearable pain of late and today I put a 10mg Butran patch on to see if it would help . I have to admit that my legs seem to be easier but where I have had a change in my medication I seem to be hurting in other parts of my body .. My GP put me back on Ramipril 2.05mg a month ago after my rheumatologist took me off it a year ago ..I went onto Leflunomide 5mg but it makes me as high as a kite ..away with the faries and I struggle to get up and going more than usual of a morning ..so I have gone back on 5mg of amitriptyline but it seems to keep me awake at night .I find I am only able to get some sort of Quality of Life on 15 mg prednisolone and as I have also had lots of up and downs this year and have been mainly housebound through the year I went back up slowly at half/mg at a time and have 2days at 15.O5 and then 2 days at 15 mg .. Below that it seems that the pain level is unbearable . I also take Co- codomol.. Solpodol ..Next week I have to start on Amlodipine 5 mg and quite honestly I am petrified as I have read up that its side effects are worse than Ramipril.My thoughts are with you particularly as you live alone .. I have an understanding Partner but he has been tearing his hair out lately not knowing how to cope with me crying my eyes out due to my pain..you didn't say if you are with a Rheumatologist as mine took over my pred reductions because my usual GPs gave up on me. Take care and I hope you get the right steroid dose to help your pain ..Trish 29

[trish29 in reply to albatross]

Hello albatross . sorry you have had a hard 6 year journey .. I don't know how anyone can describe our pain , we are all so different . I have been in unbearable pain of late and today I put a 10mg Butran patch on to see if it would help . I have to admit that my legs seem to be easier but where I have had a change in my medication I seem to be hurting in other parts of my body .. My GP put me back on Ramipril 2.05mg a month ago after my rheumatologist took me off it a year ago ..I went onto Leflunomide 5mg but it makes me as high as a kite ..away with the faries and I struggle to get up and going more than usual of a morning ..so I have gone back on 5mg of amitriptyline but it seems to keep me awake at night .I find I am only able to get some sort of Quality of Life on 15 mg prednisolone and as I have also had lots of up and downs this year and have been mainly housebound through the year I went back up slowly at half/mg at a time and have 2days at 15.O5 and then 2 days at 15 mg .. Below that it seems that the pain level is unbearable . I also take Co- codomol.. Solpodol ..Next week I have to start on Amlodipine 5 mg and quite honestly I am petrified as I have read up that its side effects are worse than Ramipril.My thoughts are with you particularly as you live alone .. I have an understanding Partner but he has been tearing his hair out lately not knowing how to cope with me crying my eyes out due to my pain..you didn't say if you are with a Rheumatologist as mine took over my pred reductions because my usual GPs gave up on me. Take care and I hope you get the right steroid dose to help your pain ..Trish 29

[albatross in reply to trish29]

Many thanks for your reply. I think sometimes I am going mad as I go from one thing to another and just don't seem able to get off my knees!!!!! I have to keep going with all the "ordinary living" things but to know that there are there are same, it is NOT all in my head. I don't have a rheumy. the one I saw at the beginning didn't have a clue so my gp didn't want me to back.

I am taking amitriptyline 20mg at night for my pain and amlodipine 5mg. supposedly to keep my bp down, but as I was getting really dizzy and nasaeus when I got up from sitting down I have reduced them to every other day and I don't get that now.

I was interested in your comments about the preds. as it seems the goal is to get down below the terrible 10mgs. but since I have reduced down to the 10mg. things have been worse. When I saw the orthopaedic surgeon about my hip and knee I said I was taking 10mg but had gone back upto 15 because of the pain and he said it was alright because of the stress and tension of the pain. I decided weeks later to come down to 10 and I think perhaps that is the problem I should go back up to 15mg. until this hip and knee are sorted out because I am in so much pain .

Many thanks for relying you have helped by being someone who I can "just sound off "to. xxx

[trish29 in reply to albatross]

Hello albatross you can sound off at me at anytime as I know what you are going through..and we're on the same medications but you are on higher doses ..I get the giddiness on a much lower dose. I feel better on the 15mg steroid but know I have to get down lower before I see my Rheumatologist in October but I'm trying to be careful as well and try and drop down by half a mg after my weeks holiday .Take care and I hope your pain settles soon. trish29

[trish29]

Sorry my i- tablet is playing up and my comments gone through twice . trish