The vagueness intensifies!

I had another visit to the Rheumy today. I could hardly walk due to severe pain and stiffness in my knees and felt dreadful too - you know when your RA is bad and you feel like you have flu and want to hurl etc? Yeah that.

Anyway he had a prod at my joints and told me I must still stay off the Humira until he has talked to the Neurologist again. Even though he emphasised the spots that indicated bleed damage were tiny and may be very old. I think they are communicating via message tortoise.

So I'm back on Prednisolone, which is a relief and scary at the same time, but at the end of the day severe joint inflammation and pain or the risk of thinning bones and other steroid side effects? I choose steroids, they do seem to work really well for me.

I have to see him in four or five weeks, he said he may keep me on 10mg Pred more long term. It seems to be the only drug out of the many I have tried that has had any effect at all on my RA. Shame I can't find something long-term that works as well.

Rheumy was rather mournful of the fact I had tried and failed at so many drugs. I hope I don't turn into one of those patients that make a doctor's heart sink when they walk through the door! There are some things I wish I had asked him now, will have to write them down next time.

I came home, took 20mg of Pred and some co-codamol and had a sleep. Woke up feeling massively better than I felt in a while. I should be able to cope with the last two weeks of work now, I was dreading it as my knees made it almost impossible to walk. I nearly fainted walking to work on Friday, the road and pavement were spinning and I started to go but managed to hold it off. and get there.

Hope everyone is doing as well as they can,


15 Replies

  • His mournfulness was probably for you not for him Dogrose. Poor you to have only Prednisolone - but I'm glad that this gives you some desperately needed relief at least. Is that every drug now tried and failed then? Hugs and hope you have a better time now. Tilda x

  • Steroids are a necessary for us aren't they. I hope you soon get some

  • Really glad that you feel so much better but it must be worrying & frustrating when you can't find a drug that fits the bill other than the Preds. It seems to be a fairly common experience & it is a possibility that worries me as Mtx just sort of stopped working one fine day so it's all too easy to imagine it happening again & again.

    I looked at your profile but you don't say which drugs you've tried - are there some other options remaining? After all, it only takes one drug to turn things around. Like most people these days I'm wary of long-term steroid use too but possibly 10mg daily is not too bad? (I researched steroids when I was on them but all that info. appears to have flown out of my head!)

    I hope that your Rheumy comes up with something at the next appointment but that meanwhile you continue to enjoy feeling so much better.

    Luce x

  • Know the feeling!!!! Can't hardly walk last few days since I got back from caravan at the weekend. Got to go to physio and dreading it cos it's such a long walk into the hospital, the disabled bays are full....of doctors!! I hope when I see the nurse she will give me a jab, last one I got was January, until this Humira gets into my system,,, second one tomorrow!!

    The doc is probably disappointed for you, mine does that when another drug fails and looks like he thinks he has failed me, no I am just an awkward customer!!!!!mrest up today love A xx

  • Hi

    So sorry you have trouble finding something that suits! I am very lucky in that mtx seems to do the trick for me. yes, those flu like symptoms I know very well. This week has been bad for me with fatigue, those flu symptoms, painful feet and hands, and to top it all off a big case of the "weepies" !! Gave my feet a long soak in Radox which helped and am having a few days of couch potato syndrome!

    I dont think your drs. hearts will sink because of you, as has been said above, they must get frustrated that nothing is helping you. Do write a list before you go next time, it really works. I've started mine for my 2nd May visit.

    What made the pavement spin for you? I tried co-codamol once and it gave me a "cheap drunk" - had to tell my husband to keep an eye on me as we went round ASDA because I was feeling really strange and woozy, as if I was being pulled upward by my hair! Dont take that anymore, felt awful on it.

    Sounds as if you are finishign work? I retired at 62 cos the RA was taking over my life and have been better since - less stress and able to manage my days better.

    I do hope something is out there for you to take that suits. Dont give up and remember there will be somethign out there for you.

    Lynn xxx

  • My heart goes out to you, it really does. That feeling like you can't take another step. Good days and bad days, sure isn't that life anyhow? Keep it up, a day at a time!

  • Hi, Last year i couldn't walk at all and was feeling awful so i fully understand how hard it is for you. I am now on rituximab after failing enbrel and feel so much better. Have you tried rituximab? there are many news drugs coming out so don't give up hope as they will get you something to help. Last year i had 13 steroids injections to keep me going.

    Hope you feel better soon. x

  • Hi, I find going to see the Rheumy is very frustrating. From my own experience they are ignorant of how we feel. Each day can be like climbing a mountain with the flu like symptoms added to by pain. An hour ago I felt incredibly cold and tired/head dizzy. I had to make a point of sitting and resting and then went and had a hot shower which helped. The Rheumies tell us to try this and that but do not consider the side - effects.

    Im personally scared to try other meds. Ive had a carry on with Sulfasalazine. Ive felt unwell since I saw my Rheumy and told her I felt so ill (I looked rough- embarrasingly rough). It turns out that it was actually the bad effects of the Salafasalazine. She should have spotted that and thought that I shouldnt be feeling constantly that bad. It has even made me question the idea of having a second child.

    I completely understand where you are coming from and do not agree that the rheumy is just feeling sorry that a certain med didn't work. They have no compassion and absolutely no understanding of how we feel. Claire x

  • I understand that you are basing this on your own experience to date Claire but I do know of one rheumatologist who is very compassionate (not mine - but he's been quite kind to me). I've heard this from one of his patients as well as his sister-in-law.

    My friend, who is related to him by marriage, says that she's met several consultant rheumatologists at family parties with him and they all seem among the more compassionate doctors she's met. I really don't see why anyone would specialise in rheumatology otherwise because unlike oncology or other specialisms these doctors have to have long term relationships with their patients. I'm sure all doctors get a degree of compassion fatigue, and as with all professions there will be some lousy ones, but I imagine what motivates them (apart from the money) is helping relieve patients of terrible pain and illness. They do like to try and keep us on the meds if they can and they don't actually have to suffer the pain, fatigue or depression we suffer so they are never going to understand fully how we feel but I think your comment is a bit too sweeping and may alarm some of those still to be diagnosed a bit? Tilda x

  • Hi Tilda, I agree maybe I was to general overall and I hope most of the Rheumy's are compassionate - which as of yet I still need to meet one. However my rheumy nurse is fantastic. I have learn't alot from her and she knows how the meds can affect us. She is sympathetic because she has lupus - another type of auto immune disorder. She has herself experienced some of the meds we have to take. I have learn't more from my nurse and have a better understanding and wish she was my Rheumy doctor. My cousin is also a nurse who has chrons - another auto immune disorder, since she was a youngster. She has been another source of information and understands my points about having understanding and long term relationship with the specialists. I have never ever been told the facts about RA, like what to expect, types of med and what the blood tests are even for. I must be in a duff area if this lack of information/care is only me. Claire x

  • I'm not saying all are kind and caring Claire. I live on an island and have only been seen a few times since diagnosis - and only get information when I'm pushy and well informed enough (through NRAS and RA Warrior etc mainly) enough to ask him stuff. He looks a bit weary but when I told him that my RA was seriously impacting on my quality of life and added "but I'm sure most of your patients say this" - he replied "not unreasonably!" and from this I concluded that he was quite sympathetic but very busy. You don't know how lucky you are to have a good rheumy nurse who has first hand experience of autoimmunity. I have no rheumy nurse - never met one - only my GP and a very distant rheumy. They are usually very overstretched so hard to find time to explain stuff probably. Tilda x

  • Oh and I forgot to say. My dad is permanently on 6mg of Prednisolone a day and he is ok and they are in fact keeping him moving. Claire x

  • Hi sorry your having such a hard time of it. I have been put back on the steroids they make me depressed. Yes there do let me live my life with out pain. Also they do seem to kick real quick. I do worry about my bones. Hey maybe i shouldn't coz i think ra is the main problem. Hang in there i'm sure there will be a drug for you xx

  • Sorry to hear about your knees, and I fully understand. Hope for better days soon.


    Julie xx

  • Thanks for all the replies :)

    I'm feeling a lot better now the steroids are kicking in though I have a bit of a chest infection, not bad but it's dragging me down a bit.

    I think my Rheumy was mournful not because he was sad for me but because I'm not an easy case, he can't just wave me off with a box of pills that work and see me in 12 months. He has to actually work on my case.

    It is annoying they won't come to any conclusion regarding my brain spots, we want to move soon and I will have to change health authorities so I want to get it resolved! I am supposed to be on

    Humira - I have four Humira pens in my fridge waiting, they are probably out of date by now. It wasn't really working for me but I had only taken four and would like to give it another chance.

    Keep gimping on folks! XXX

You may also like...