I started going to see a rheumatologist eight years ago and she was lovely and really tried to help me by trying various medications etc. She said that she wanted to work out which kind of arthritis I had and that it was definitely a form of inflammatory arthritis. Sadly she left the hospital to work abroad and soon after that she was killed in a traffic accident. Just before she left she had put me onto Metatrexate.
I then moved to a different hospital but the rheumatologist there was dreadful and I changed back to the original hospital. Unfortunately things have not improved with the one I see now and I have got very much worse. When I was put onto Mtx I was in pain but was still able to take short walks and go around the park at the end of our road. I could also get on a bus into the town and carry back a small amount of shopping. Now, however, I can't do any of this and struggle to walk up the garden path. We have had to buy a stair lift and a lift to get me in and out of the bath, so you can imagine just how much I have deteriorated. I am also loosing quite a bit of hair and feel low and down for two days following the day I take the Mtx.
Through reading up on things I more or less diagnosed myself as having psoriatic arthritis and the doctor agreed with this. Whenever I go to see the rheumatologist, she never examines me (my fingers are all bent out of shape and very painful but she never even glances at them.) She just keeps me on the same medication year after year and tells me that there is nothing else that would help me. I have asked about going on biologics but she says that it wouldn't help because I also have osteoarthritis. But surely if it helped the psoriatic arthritis that would be better than not having it at all. She says she won't give me any more steroid injections because I have had too many, yet an orthopeadic doctor I recently saw about my knees was happy to give me one and suggested it himself. It was only the second one I had this year.
I am going to see the rheumatologist again the week after next and feel that I am desperate for help and yet even though I make out a list each time, I just get absolutely nowhere and she just seems to clam up. I tell her that I think I have failed on the Mtx, given the fact that I have been on them for nearly seven years and have been getting worse all the time, but she says that I haven't failed on them.
Sorry this has been so long, but I am hoping that some of you can give me any ideas for what to do and say at my appointment. The pain is so bad and I have become like an old woman.
If things don’t improve at this next appointment....is it a bit late to cancel that now? I’d have a word with appointments & explain the rheumy you have been seeing just hasn’t helped you at all,& that you would like to change Consultants as you feel a clinical change is needed as you are seriously deteriorating.
You are probably best not have a big rant criticising her.....say you have had no change of meds for 7 Years, (which is inexcusable ) & you feel a new opinion would help.
I wouldn’t bang on about your fingers as that maybe osteo....wait until you get another Consultant who will be looking with fresh eyes.
I’m sure this happens a lot, so don’t feel you are being difficult.
Do you have a Rheumy nurse you can call tomorrow before your next appointment .......you could find out if you could maybe change consultants for that appointment ?
I really hope you manage to get a more satisfactory doctor for your next consultation ....start making your notes now. ...explain how many alterations you have had to make in your house, & how your life style is deteriorating...& that you really need some help....soon.
Thank you for replying AgedCrone, I wish now that I had asked to change to a different consultant after seeing her last time, but it will be too close to my appointment to be able to request that now. You said not to say anything about my fingers and I know that it could be because of OA, but I have also read that pain in the top knuckles is also a sign of PsA. Also my middle finger of my right hand is now quite swollen and puffy which is another sign of PsA. I have already started to write the notes of things I want to say. I just feel that I am getting no where with it all and it is so disheartening.
My way of thinking is to leave the fingers until you see the new Rheumy, because he/she will read your notes from now back...if the first note is about the fingers in a dismissive way...as you seem to feel your present rheumy is not addressing them......it might be better if you introduce them yourself after a more general discussion of how you are feeling.
Obviously you must decide how you proceed...... it was just a thought.
But I would still have a word with your rheumatology nurse and see how she feels would be the best way to get across how unwell you are feeling & that your fingers are very troublesome. Drop broad hints that you would be available at short notice to see a different consultant .
Some very good advice from AgedCrone. A new rheumatologist seems the way forward. You are not being difficult or asking for something unreasonable. Stay strong.
That is just dreadful the way you have been treated over the years. I don't think methotrexate is working for me after 7 months and I'm asking my rheumatologist to hopefully change medication this week, I couldn't imagine going through 7 years of it!
If she isn't prepared to listen it is time to change rheumatologists. By the sounds of it you have already suffered severe joint damage which could have maybe been prevented? There is so many other treatments for psa your rheumatologist should be aware of that. Good luck and just be firm with her that a change is now needed!
Thank you for answering me Pinky, and I really don't know why I have just been left of a drug all these years that is not helping me and that I am getting worse all the time. I just can't seem to get through to anyone just how bad it is now. I even have to resort to morphine a lot. I bought a mobility scooter about four years ago and did well going round on it, but now it has got too painful for me to even use that and I worry a lot about the future.
Can you get your GP to write a letter ? This is dreadful. If your having flares in between appointments take photos write s diary. When I was going through a particular bad time I would email my clinic nurse and send photos and copy my Rheumatologist in. They probably think I’m a nutter but I got seen and listened too. Unfortunately the loudest people get heard. Be proactive be heard!!! It’s not in my nature but I’m learning. Good luck
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I think you are right in saying that you only get listened to if you make the most noise. When you say about being in a flare, I think I am always in a flare now as I am in continual very bad pain. This dreadful illness has taken away so much from me. I can no longer do all my hobbies and I can't even lift up a kettle and make myself a cup of tea anymore. My husband has to do all the housework etc. A few months ago, I thought I would pull up some weeds from the garden. I just managed to pull up 12 weeds and was in so much pain it was unbelieveable. It took me three days to recover from it. I expect my GP might write a letter but I go there such a lot that I try to ask for as little as possible.
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All ways give a full and true account to your GP. I was like you always tried to put up with didn’t want to be a bother or make a fuss . With hind sight I should of made things clearer rather than being a martyr I might not be in such a mess.
I always take my husband in the room with me, but he doesn't say much. I have said that I want him to be really assertive this next time. I know that on a couple of occasions he has asked a question and the rheumy just hasn't answered him. Thank you for you good wishes Ali.
My partner takes notes for me throughout the appointment and asks for clarification, if your husband doesn't get an answer then he can re ask the question. Don't be afraid to be assertive.
Also call PALS of the hospital and explain you need someone to listen and maybe they can assist you in getting her to listen too.
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I know that PALS are very good, but they are there more for complaints and I don't really think that they could do anything to help me with this problem.
I’m sorry that you are suffering so and feel your rheumy could be doing more to help you. I would definitely ask to see a different rheumy, I did this after a couple of appointments where I just wasn’t listened to and came away thinking I should have just sat there until I was listened to. Nowadays I’m afraid I am more pushy and go with pre-planned questions written down and if I don’t feel the rheumy has heard me I just repeat myself. Sad that we have to do that but we have a right to proper care and if we aren’t getting it then we need to take it further. I hope you get some answers and start to feel better soon.
Thank you for your reply Kitty, I don't know whether or not I am able to ask for a second opinion within the same hospital or whether it would have to be at a different hospital. It really gets me down when I read about all the people who are helped so much when they are given the right combination of medications or put onto biologics and yet I am never able to try anything different. It is as if they don't want to bother to help me anymore.
You could ask to see a different consultant in future and explain why rather than asking for a second opinion. That’s what I did and I haven’t seen that consultant again. It was hard as we don’t think we should question our doctors but I’m glad I did as my care has been better since and I feel listened to now.
Your post made me so sad; I think it’s shocking treatment. The patient advice line are there to support you not just for complaints: please put everything you’ve said and your very valid concerns in your post above in writing/email especially the constant pain you’re in and the rapid deterioration; you can’t even use a mobility scooter & need a hoist for bathing etc. It’s far easier to get your thoughts in order and They cannot ignore it if in writing (I have done this for far lesser problems than you are suffering).
The alternative is to carry on as you are; your quality of life is important and so are you! I would stress how low it’s making you feel too, unsurprisingly. I can’t believe you’ve been on the same drug for so long with such a poor and worsening outcome. x
I would talk to your gp Holly. Might also be worth ringing nras as they may know where the good rheumatologist are.
RA vs OA vs PsA. I've been told RA and anything that doesn't fit with that is described as OA or.Fibromyalgia. My hands and wrists are sore, my achilles, neck and upper back etc. Also have tendonitis in shoulder an hip. My DMARD is not doing great also. I am tapering off prednisone. The thing is, I am 20 years younger than you. Reading your post is so familiar!
I hope you soon get something to help you Peeps. I have also been told I have fibromyalgia, connective tissue disease, gout, curvature of the spine and degenerative disc disease as well. It really makes you wonder if they know just what it is. When I first became so unwell, I was told I had M.E.
I was told inflammatory arthritis at first. Fibro wasn't really mentioned. My soreness and inflammation responded to Prednisone, Diclofenac and Hydroxychloroquine, so the diagnosis seemed Ok. I'm just not sure it's RA. I'm seronegative. Methotrexate was awful. It's side effects were too much. I felt sick and my hair was falling out. Sulphasalazine made me feel like I had the flu. The hydroxychloroquine made me itch. I think my rheumatologist will try and keep me on the Leflumonide as I don't think I qualify for the next step (I think l have to have erosions or something).
When I was reading your post I had the feeling that you are writing about me. The difference between us is that I had the same rheumatologist and I see him for almost 3 years. I am 44 and on Methotrexate. My consultant doesn't give me any more steroid injections and he doesn't change my medication even if I asked for it and I said that i had different side effects and still have lots of joint pain and two of my fingers bending. I said to him that I think I have psoriatic arthritis as I have rashes but he doesn't listen.
He is just not helping me at all.
I went to a private dermatologist to find out if I have psoriasis or not. I just got the diagnosis of psoriasis recently.
I will follow your post and please let us know if you get anywhere on this upcoming appointment.
I am so sorry to hear of how you have been treated holly-willow. Back in 2008 I felt the same as you, I was being treated locally for my RD and like you I was in so much pain that I could hardly get from my chair to the loo. I made an appointment with my GP and asked for a private appointment with the Top Rheumatologist at another hospital which is a ferry journey away. I paid privately for this initial appointment and then continued seeing him on the NHS. I have found his treatment for me amazing, still in some pain, lots of things I still cannot do. I also quietly insist that I see him at appointments. Totally different to the one I was seeing locally. My husband does not come into an appointment with me as he is too emotionally involved, he finds it hard going in seeing what I have had to contend with these past 30 years. He is amazing for coming with me to all my appointments but would rather sit in the waiting room and find someone to talk with. Medication does depend on what the Rheumatologists are allowed to prescribe under their Hospitals CCGs - Clinical Commissioning Groups. Quietly insist and Take Care.
Thank you for your reply Recorder. I know that it is no good just going on the way I am and the future worries me a lot. The pain is there constantly and I am so tired because I don't get much sleep at night for pain. xxx
Felt so sad reading your post. I have psoriatic arthritis and i went through4 consultants before I found someone who was experienced with psoriatic arthritis. I had 3 years where nothing could touch my pain. The doc I see now is in London and I’m in Kent so a total pain to get to but worth it. I first saw him privately then asked my gp to refer me to his nhs hospital. It took about 6 months . But again .. worth it. Steroids got me through it all but now have osteoporosis . You can ask for a different doc in your hospital. So do lots of research and find who u want to see and go for it. If u can afford to have a private session with blood tests it helps I think as the docs just have more time and gives u hope. I’ve been on all demards and 3 biologics... bad side effects with all of them. Am now on a jak inhibitor Tofacitinib which has given my life back to me. It’s not perfect but I’m sure as u well know all u want is for not to be in pain. Good luck and yes I agree with others , be strong with the doc , there are good ones and bad ones!...and move on as quickly as possible.
Thank you for you reply Yogi-bear. After reading all the replies to my post, I know that I have to do something and not just continue as I am. It may end up with me doing what you did and paying for a private consultation in the hope that I could get any treatment on the NHS.
Hi again! I just wanted to say if u do end up seeing someone private they can’t medicate u with biologics ( if that indeed is what u need) u will have to be referred to their nhs hospital ,And u need to follow the NICE protocol as far as meds go. U have to have taken and failed certain meds before u get to the biologics and also have sufficient clinical disease. Psoriatic arthritis has a different pathway to ra. Your best bet initially is to google the consultants in your hospital . If u think they might be more experienced in psoriatic arthritis then ask to see them. There is a different pathway to the biologics for psoriatic arthritis. U can just google NICE. U say That uve had lots of meds, well maybe u are Legally eligible, but u have to be clinically diagnosed. Don’t let her fob u off.. put your hands in front of her and say I would like u to LOOK. Be strong and good luck!
The problem is Lee that I have already seen a different consultant at another hospital so I doubt that my GP will do that for me again. I have written about that in my post at the top.
I am tired of my RA dr treating me by the book! After 10 months of having endless flares in wrists & shoulders and the ONLY thing that helps it is prenisone I am at my wits end. So much prednisone that I now have Cushingoid!
Before I saw him I had a great life, tons of energy, a great head of hair, petite small body & on NO medications!
Two years later all is so messed up from all the crap biologicals he had me on that did NOTHING but ruined my life, sleep my whole weekends away, made my hair a mess, look like a pregnant cow and need 5 medications to counter the effects from the biologicals! Oh and for good measure lets throw in a Sinus Surgery from FUNGUS!
He says I am unique, then listened up doctor start thinking outside the box. The biological stuff just does NOT work on me. Last chance to earn my money doctor!
As a matter of fact we never discuss test results...EVER!
Each visits is exactly the same. I keep a journal and talk and tell him how much pain I am in without the prednisone, how exhausted I am all the time, etc etc and all he does is type in the computer then makes me sit on the examine table and feels my fingers. Which by the way have been so swollen the past 10 months I had to have my wedding rings CUT OFF!
I go back the 17th for my 5th IV Infusion of Actemra. I am telling him NO MORE!
I want to flush my body of all this poison that is doing NOTHING but making me sicker and sicker!
It is a risk I am willing to take because the stuff being injected into my veins is not working anyway!
It is great to hear that they work for certain people, however my life has been a living hell since I started on them!
I am so sorry to read of all you are going through. It seems to me that if a person is a clear cut case then the doctors are ok with that, but when we are a more complex case, they get tired of us and don't know what to do. At least your rheumatologist has you on the table and examines you, mine doesn't even do that. I wish you all the best and hope things work out for you.
I had this problem with my rheumatologist. At my last appointment I asked to change consultant which I have done. I had a scan on my right elbow early September which showed active synovitis. This was done at my local hospital the one I see Rhuematlogy is another hospital. Saw a specialist nurse 2 weeks after scan and told them I had been given a verbal message of results of scan that day. Couldn’t take take it from me needs the results in writing. It’s a long story but the consultant I was under went by my blood results and never assessed my joints adequately. Said no inflammation in right elbow and said see specialist nurse in 6 months.
It’s now 7 months and I’m in agony taking co codamol. Left to fend for myself. Have GP appointment next week to discuss scan result. Going to ask if I can have a copy to show my current rheumatologist.
You sound like your experience is very like mine Matilda as I am more or less left to get on with it myself and with no help. I am going to see her on Monday and am going to be assertive and if I get nowhere, I will either ask for a second opinion or to be referred to a different consultant, preferably within the same hospital. There must be more that can be done for me than this.
My rheumatologist was a lady. Do you live in Essex Holly-willow. My friend has the same consultant as me with the same issues. I had to build up a lot of courage to ask to change. They told me to ask to change consultant when booking my next appointment . The strange things my is I usually receive a copy of GP letter after my appointment. This time I haven’t. I wonder what was written in the letter. I have an appointment with GP next week to discuss the scan results. If Gp has the results hospital must have them as they were going to cc them as well. Not heard a thing.
I wish you luck hope your appointment goes the way you want it to. Best of luck
Hi Matilda, no I don't live in Essex. I hope you get better treatment in the future. It seems to be the luck of the draw in the kind of treatment we get from rheumatologists. One I had told me that if I lost weight all my pain would go but now that I have managed to lose a lot of weight, the pain is worse if anything.
Are you in a position to change rheumatologist? can you get someone to recommend you someone else? is your GP good? He/she can recommend someone else.
Of course you are a candidate for a different drug...you might be surprised at how much better you will feel if you stop the methotrexate...from what you say its not helping and making you worse.
Thank you for answering me E_2b. I am in the process of asking about other rheumatologists in my area now, but I wish I had done this much earlier so that I was seeing someone else by now. I am no looking forward to seeing the usual one next week.
Ok, I spent a lot oftime in the past leaving rheumatologists...some public some private...
It could help to have things written on paper....
You are great and brave and you are leaving no stone unturned, don't lose hope, my pains went away eventually and only come back intermittently at the moment
Thank you for your reply. I don't feel at all brave or great but I am desperate to get some help for the pain I am in and to stop the increasing disability that comes with it.
I have, in fact, rung up this morning to see if I can see a different doctor for the next visit but have been told that if I want to see a different one that I won't get an appointment until at least next March, so I am going to see the one I am booked in with on Monday.
However, she said that she would take notes of all that I have said to her and have a word with the doctor before she sees me so that she will know in advance just how I am feeling about everything. She said that I probably don't get examined because all of the 15 minutes I am allotted are taken up by discussions etc. She said that they are just so overloaded with so many patients and not enough doctors. What a dreadful situation that is.
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Left confused by my visit to the rheumatologist.
Still no real answer.
Surgery for synovial chondromatosis anyone?
I have recently been diagnosed with psoriatic arthritis.....my fingers are swolen ...cant get my shoes & socks on & getting in and out of th
Has anyone else been told that they're "not sick enough"?
