Well meaning friends

I'm going through a difficult patch, off all meds waiting for an MRI scan before rheumy will even discuss what medication I can take. RA symptoms have returned with a vengeance and can't do a great deal for myself - hands hurt and are weak.

I have lovely friends who I keep in touch with, but they don't have RA and can't believe the hospital system.

Now they're encouraging me by sending me messages to say one less day before your scan then all will be well.

Except, you who know about all this, the twists and turns that can happen, the next stage is no guarantee, and the only way to stay stong is to take one step at a time. I don't want to be disappointed if my rheumy doesn't give me the biologics I really want, I think she could put more tests/ time in my way.

Maybe some of you are going through a similar experience which is why I wanted to share.

26 Replies

  • Cathie I am afraid I'm with your friends on this one. I got a biopsy , I was sure it's a waste of time but in the end it have me information and eventually a possibility of treatment.

    Hang on I think to that idea that the scan will show what's wrong and then you can get the help you need. Don't doubt your own knowledge that something isn't right. I am positive that the Rheumy with the correct info will make the correct decisions WITH you. Please try to keep strong and it's one day nearer dome knowledge , i hope you don't mind me saying Cathie but What can they say my friend, they will be pinning their hopes on you getting the scan then the treatment. And that is actually a possibility!

    It's hard as I hope that is going to be the way forward for you and at least with the MRI information it will let you and the docs know what's happening.

    I was actually scared before I had my biopsy, what will it show, will it help in the diagnosis, what if it all a hints waste of time and I put up with six weeks healing? But it did show and now I'm already preempt ing the what if the treatment doesn't work. Which I shouldn't .

    so I'm afraid as I think I'm with your friends on this Cathie that the scan will show your problems and then you can start treatment and I don't think it actually does any harm to think this way? I do hope you agree in some ways. Don't worry it will at least give you some information xxx

  • Thankyou allanah. I suppose I'm trying not to get my hopes up as rheumy has ignored all the other evidence and I suspect there's rationing going on. I do appreciate my friends goodwill. I suppose I was trying to preempt a disappointment.

    Hard isn't it.


  • Very, and I admit to being the same during my recent tests. But Try to think positive, you know things aren't right and the scanner is very sophisticated so should pick up problems. I just can't believe they are putting you through this for biologics! I would not be able to do it or would need anaesthetic before they put me on biologics lol xxxxxxx

  • Stay positive young lady, Allanah is talking sense. She knows more than anyone what your talking about as she has first hand experience as she has been there. I don't think there is anyone more knowing about how your feeling at the moment. I wish you well Cathie and stay positve.xxxx

  • As you know Cathie I'm still off all meds right now too so I completely understand where you're coming from. My hands and feet have become very weak and painful. I have to go to work later and smile and serve my customers in the shop but all I want to do hibernate. I'm so run down I've also got a lovely big coldsore which looks like a Hitler moustache, adding to my dismay. My appointment to discuss a way forward is a week tomorrow but that feels a very long way off. I'm pinning my hopes on finding a drug that works but like you it depends on the outcome of the ultrasound scan which I had last week. Keep strong Cathie and be sure were all thinking of you. I haven't even tried explaining to friends as I know they just don't understand how it feels. x

  • I can sympathise but on a good note they are not ignoring you .. my friend has been going thru chemo and I always give her diary with my shifts in so I put countdown like one chemo to go and lets go celebrate after last one . She admitted it didnt help as just cos chemo finished she didn't feel like celebration as she still felt crap . I understand now I expected her to be happy and now know it is not that simple. I misread it totally as your friends have xx

  • It's about managing expectation I suppose. I'm sure your friend really appreciated your support though

  • Thanks everyone. It helps to hear from people who know. My perspective is that rheumy is convinced I'm in remission and has not listened to me for 18 months. Now I'm as incapacitated as I've ever been and I've lost trust in her. Spent most of the year in bed or in house after withdrawal of biologics and methotrexate. If she doesn't acknowledge what's going on, I'm going to get second opinion and complain. She's the second consultant I've seen since moving to this hospital.

    But I ain't giving up.

  • Its so hard to have to anticipate having to fight for people to listen. Maybe we should attend each others appts mob handed xx that would get us listened to xx

  • From my point of view I cannot understand why they took you off all medication even if you had gone into remission. To my mind if any of us go into remission then it's drug induced rather than natural remission. But then I am only a common or garden person and not a medical person, so I may be talking through my hat so to speak.

    I do hope that you get the medication that you deserve Cathy as you really deserve it, you are always here for us and give sound solid advise to us all. Take care.xxx

  • Thankyou. They have silly ideas medics I think. We have to keep informed to stop them making mistakes. I've been on biologics for a long time, they worked well for me. But rheumy wanted to be sure i was not just in some spontaneous remission. I've been arguing that's wrong since October 2012. All I know I can get for sure is a steroid sticking plaster.

    Just hoping that my hands are good and inflamed on Saturday for the scan

  • I've found that mental (emotional?) acrobatics are required pretty much all the time, I expect you know what I mean. E.g. trying to get on with life, not obsess or worry too much, but still monitor my own condition rather than slip into denial etc. etc. And I guess you are trying to think positive while not getting your hopes up!

    It's horrible when you lose faith in a rheumy. If rheumy appointments were ten a penny it wouldn't matter so much, but everything takes so long. My ex-rheumy was dismissive, perhaps simply not very good & I too strongly suspected rationing of biologics. It was a palaver getting a new one & my expectations were not great - result: limbo & possibly some depression while I waited. The new consultant is amazing - incredibly thorough, fierce(!) and determined to get the best possible outcome for me. What a contrast.

    Okay so thinking about a change of rheumy might be the last thing you need at the moment, but I thought I'd share, just in case. Meanwhile, did your current rheumy order the MRI? Seeing as they are so expensive it sounds promising to me, with MRI evidence it would surely be very hard to deny you biologics? Oh, the very best of luck with this, it's a tough one.

  • Yes she did order MRI I think she's hoping that it'll prove I'm in remission. Expensive in more ways than one. There's a long waiting list and quite honestly a 5min examination of my hands would show the inflammation. I've had to wait 8 weeks and will now need to see a physio to get back on my feet.

    Thanks for your understanding, I've been holding back from sharing as I don't want to worry people. It does undermine my faith in the medics as it suggests they can withdraw meds. If they get it into their heads.

  • I really feel for you Cathie. I'm also off all meds at the moment having reacted to everything so far; I also don't get out of the house much as doing anything's very painful and I just feel ill all the time. And I have friends who are expecting the best for me, which manifests by them thinking that the next appointment or drug will be The One and all will be well. I think it is partly because they don't know how to respond to this situation, they (thankfully) have no frame of reference for dealing with chronic illness; instead their experience is seeing the doctor, having some form of treatment and getting back to life. .

    Chronic illnesses are largely hidden away from most people, I remember being surprised in my last job finding out how many badly disabled children there are in my town but I had no idea because I couldn't see them. Now I'm stuck at home and this hobbling body is hidden from sight.

    Your friends, and mine, want to be hopeful, they want to see the situation improve and will see any activity as a positive move.

    I'm grateful for a couple of excellent friends who 'get it', one makes sure I have some opportunity to get out and the other does my ironing. And I'm grateful for those who don't quite 'get it' but have stuck with me, they might get it wrong and unintentionally be annoying but they're trying and showing interest - I'd rather have that than nothing.

    I really hope that life improves soon for you, Cathie, and I hope your MRI will be a step in the right direction.

  • I'm so glad that you have kind friends to help. Its so important to get out, even though its a struggle. We went down to the Forth yesterday, on the road beneath Hopetoun House and it was lovely to hear the waves etc. I hope that you have some perspective of getting a treatment that works.

  • What a lovely place to go! I'm looking forward to the day I can sail along the Forth again. It's great sailing under the bridges - a totally different perspective on those huge structures. Maybe the third forth bridge will be up by then :-)

  • the building is happening quite fast, so maybe! There's a nice picnic place just by the entrance to Hopetoun House. And you're so close to the shoreline, the waves were very noisy yesterday. I used to sail - down near the Isle of Wight and there's nothing like it. One of my fantasies for a special birthday would be to take one of those big ships which go from Ullapool to St Kildas. I've spoken to the guy who runs those things and they are reasonably accessible. Not now though!

  • I have the upmost sympathy for you. Nothing worse than being in pain. You need to go on line and review the NICE guidance for RA treatment. Mtx is joint protective and should be used to reduce the chances of joint degeneration whatever your symptom state. Fight your corner and search "best practice". I have had a variety of biologics now but did have to involve my MP at one point. Do the same. This is your quality of life. I would suggest a different hospital or at least consultant. Patients have the right to choose where they get treatment. It does not have to be your local hospital either.

    Good luck


  • Thanks for your advice

  • Hi Cathy i can't add much to what others have said.Hang in there. I too am waiting on test results still feeling not write. Truly is not a good place to be here's hoping you get the help you need.Best wishes Christine xx

  • thanks christine

  • I have recently been through very similar after nearly 4 years if DMArds and steroid injections. I spent many painful months waiting for scans, results then more waiting for biologics approval and subsequent tests. More waiting and chasing required at each stage! Finally I took delivery of Cimzia today and start it on Friday. Hang on in there and good luck.

  • So very sorry to hear what you are going through and dealing with. I am in U.S. so health care here is some different. I sincerely empathize with you. I hope you get the medicine you need to get your life back. Back in Dec. I was taken off MTH due to pneumonia and taking only Pred at low dose. The pain was horrible and yes, only people who have this disease can truly understand how sick we can be. I am thinking of you and wishing you the best.

  • Thanks for all the support and understanding

  • Hi Cathie, I really hope you get the right outcome, you are always there for everyone and you have helped me, you deserve the best treatment. Keeping my fingers crossed for you.

    Wendy xx

  • Thanks

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