Opinions please

[Haylz2109]

Hi all, Hope you're all as well as can be 💕

I'm back again, if you've seen my previous posts you'll know this last month or so have been really difficult. In the end I had to go to a and e because the pain was so severe in my hips, back and legs and no one could help aside from rheumatology and there was no chance of getting hold of them so the Dr's and helpline sent me to a and e. Fast forward spending 8 hours there in agony having ct scans and xrays ruling everything out yet another person saying I'm in a flare and need to have help from rheumatology I was released.

Now my problem is my rheumatologist finally got in touch with me a week after this after yet again much pestering and she for some reason wasn't happy that I stopped the colchicine (however a and e advised it due to the liver enzymes being off the charts once again) she even asked if I had increased the dose whilst on it yet provided no instruction to do so.

So she once again said she didn't know what to do with me and even though I'd had bloods done the week before she wanted me to go straight to hospital the next day to have more bloods so she could view them before the weekend to check if I'm in a flare however I have not heard from her since.

My worry is though she seems to be adamant that colchicine is the correct medication for me however the 2 times I've been on it without steroids I've been put back into a flare and because she doesn't know what to do with me I feel like she's going to want to do another trial of this medication which will be the third time. Do I have the option to decline this? When I saw another Dr who's liaising with her he said if colchine doesn't work to try Azathioprine but she seems to be reluctant in bringing that up.

She also then mentioned that because I'm now waiting for a colonoscopy due to results from my stool that instead of it being suspected lupus/behcets like I've been told all along that it could be chrons which has thrown me for 6 as I don't have any of the symptoms I would of associated with that and more symptoms leading towards lupus.

Has anyone declined certain treatments? If so what was the outcome?

I just don't know where to turn anymore I'm in the process of losing my job aswell due to not being medicated or stable enough to return to work.

Any advice would be greatly appreciated and if you read through of all that thank you so much for taking the time. 💕

[MusicalFurbaby]

Oh Haylz, I’m so sorry to hear of the pain you’re in and the runaround you’re getting from the doctors. It sounds like your rheumy is a bit stumped! It must be so stressful for you, especially on top of work troubles, and now the possibility of Crohn’s as well.

I really hope you get some answers and relief soon, and I was just wondering if it might be possible to seek a second opinion from another rheumy? I know that’s a lot of effort though, so I understand if you just would rather not. I’ve certainly sought second (and third) opinions in the past when I’ve been dissatisfied or distressed by the medical care I’ve received (or lack thereof). You have the right as a patient to seek another opinion, especially if your rheumy is out of ideas.

I’ve definitely declined treatments, especially when I’ve had adverse reactions in the past and if the doctor is unsure about how effective it will be this time around. They have to convince me! Anyway, yes, of course you have the right to decline treatment, especially if it’s harmful or contraindicated, or you’re just not convinced.

I do question my doctors. (Which you’ve probably done already.) If they recommend something questionable, like your rheumy insisting on Colchacine, I ask about their rationale for that medication. Sometimes they have a good reason. Sometimes they don’t. But I ask anyway; at the very least, it can sort out my own confusion, even if I still disagree with the doctor.

Sorry I couldn’t help more. Hope you get some clarity soon 🌻🌈

[Haylz2109 in reply to MusicalFurbaby]

Thank you, she does seem to be really stumped and everyone has always said I'm a complex case because my bloods and investigations don't show what they need. Thank you I really hope so I feel so horrific currently and it just seems to be one thing after another hitting me.

Yes I have had 2nd and 3rd different opinions from different rheumys, the reason I mentioned Azathioprine is because one of the professors my rheumatologist sent me to for a second opinion agreed that it's definitely autoimmune along the lines of lupus/bechets but said not to worry about the diagnosis they could still treat it and these were the 2 treatments he mentioned which he correlated back to my rheumatologist so not sure why she's avoiding it.

Thank you for that information, I definitely feel like the colchicine has done more damage than it has helped so I am really reluctant to trial it again for a 3rd time when so far all its done is send me back into a flare once off steroids.

Honestly you've helped a lot by giving me that information so thank you 💕 xxx

[MusicalFurbaby in reply to Haylz2109]

It’s so frustrating when our bloods come back normal! At the very least, it would be nice if the results validated our pain, not to mention gave us a clue as to what the heck is going on! It seems your second and third opinions have given you a bit of validation around the issues being AI at least, and an alternative medication. Not sure why your rheumy is avoiding that med either. Is it possible to go back to another rheumy to get it prescribed? Even a telehealth appt? Not sure if that’s an option for you though, so sorry if that’s not helpful! Glad the other info was helpful to you. I truly hope you get some respite soon 🌻🌈

[Haylz2109 in reply to MusicalFurbaby]

Isn't it ? I'm not saying I wish I had a disease but I already know I have something so it would be nice not to he so complex and have some answers! Yes thankfully the third opinion did and he seems to be clear on they can treat it or at least try stuff, unsure why my normal rheumy who's the one who requested him to have his opinion and work with her about it is reluctant to do the other medication. Thank you for those options I'm unsure if they are an option for me but something to keep in mind, I will wait now to hear back off my normal rheumy if that happens and then see what she says I'll decline the colchicine and then ask for the Azathioprine if she refuses or won't help then I'll refer her to the letter he gave stating all this and ask him instead. Thank you I really hope so too, still left waiting as usual with no timescale 😔

Thank you again 💕 xxx

[MusicalFurbaby in reply to Haylz2109]

It sounds like you’ve got a good plan there, even if there’s no timeframe as yet. And yes, I completely understand the desire to have answers! None of us want to be sick, but given that we already are, having some clarity about it would be awesome!

[Haylz2109 in reply to MusicalFurbaby]

Yes I definitely thought the plan was great because at least without a diagnosis they were still willing to help but now I'm questioning it due to the actions so far. Exactly isn't it, I wouldn't even mind being left so long if I wasn't in a flare but I'm barely functioning and with 2 young children it just gets so difficult to even get out of bed. Thanks for all your support though you've always been a great help! 💕 xxx

[MusicalFurbaby in reply to Haylz2109]

So sorry to hear your flare is so bad and you are struggling so much, especially with 2 kids running around. I don’t have kids so I can only imagine how difficult it is for you. Hope you get a chance to rest up and catch your breath soon. 🌻🌈

[Haylz2109 in reply to MusicalFurbaby]

Thank you, I really appreciate all your kind words 💕 fingers crossed now I manage to get some help this week 🤞🏻 xxx

[CecilyParsley]

Hi Haylz, I am so very sorry. I can very much identify with your situation. Previously Rheumatologists have insisted on the Hydroxychloroquine and colchicine combo despite causing severe diarrhoea, stomach cramps etc. My current Rheumatologist urged he to try it for the third time two years ago. I asked advised from the Bechets UK hub and soneone told me take it at night. I was sceptical but strangely it worked, just slight nausea but not spending hours in the loo.

That said the colchicine has not seemed to ease my pain just the frequency of genital sores which is welcome. If I were you and had severely increased liver enzymes I would refuse it. It is a toxic drug and the last thing you need is to have damage to a vital organ. You have every right to ask for an alternative and if your Rheumatologist refuses request a second opinion.

Like you when first diagnosed I ended up in A&E with severe pain then discharged as nothing found see your Rheumatologist. Sadly 16 years on I am now in the same position. For the past ten weeks I have been struggling to walk and bend or stretch my legs. I am not sleeping and in despair with the pain. I rang Rheumatology and was given six weeks high dose steroids. Within three weeks I was walking again but two weeks after they finished I am crippled again. Four calls to Rheumatology but they and my GP`s do not want to know. The pain is so severe I am not functioning yet the GP`s say contact the Rheumatologist and the Rheumatologist says well there is no inflammatory blood markers . So like you I am left suffering.

I honestly do not know what the answer is or why Rheumatology adopts this hands off approach or intractable red lines about medications or blood tests. You have my empathy and sympathy. I sincerely hope that your Rheumatologist will actually see you and assess you fairly and respect your concerns about the colchicine. Good luck, please keep us updated xxx

[Haylz2109 in reply to CecilyParsley]

Hi Cecily thank you, sorry to hear you're going through similar issues. Oh did it ? That's interesting, I'm glad that worked for you in taking them at night. I find the same tbh although I don't have the genital issues currently but I didn't find it helped whatsoever with the overall pain. Thanks for that I am concerned because the 2 times I've tried it already its sent me back into a flare and I really don't fancy trying and failing a 3rd time, it's hard enough as it is to get the help without then struggling when in a flare to get help again. That's the thing I've has 2nd and 3rd opinions from all different types of rheumys the most recent one was a professor liaising with my rheumatologist to work things out and he agreed it's autoimmune just unsure if lupus/bechets however assured me he could provide treatments regardless and he was the one mentioning Azathioprine so I'm not sure why my rheumatologist is more set on the colchicine which clearly isn't working for me.

Omg that sounds almost identical to me literally as soon as I'm on steroids the pain is gone I can function like a semi normal person 😂 as soon as I'm off steroids however it's absolute hell and I can barely make it through a normal day once I'm able to get out of bed. My hip pain has eased somewhat I'm not sure if that was due to the morphine or what but the leg pain I had at the same time is just never ending and still affects my sleep etc. Yes never any inflammation shown with me either had a scan yesterday on my hands and they weren't impressed due to nothing showing but I wasn't the one requesting the scan it was the professor.

Thank you for that Cecily I really appreciate it 💕 let's hope huh she wanted me to rush to get bloods so she could see them before the weekend but yet I'm still left waiting. If only thing were simpler with these autoimmune conditions and we weren't left in such a way.

Hope you're not feeling too bad currently sending hugs xxx

[KayHimm in reply to Haylz2109]

Haylz109 -

What struck me from your post was your fear that you may not be able to continue working. That is different from an occasion flare where you have to take off work for a week or two.

What I hear is your rheumatologist is in a difficult place. She knows you are not doing well. The steroids make you better but they come with side effects. She has to take responsibility for those side effects. Everything is risk /benefit. Most drugs that people with autoimmune disease take have lots of side effects. But when organs. joints or life is threatened, they have to take them.

I think you need a heart to heart talk with your rheumatologist. Write down exactly what you are unable to do and why that may make you have to lose your job. Ask her for ideas. Is it best to quit? Tell her quality of life is important to you and how you feel about work.

Are you able to feel better on a low dose steroid? That would be good. She may be able to accept the risk.

You could bring up the DMRD too and see what she thinks.

Do you mind my asking your age? My rheumatologist got more flexible when I pointed out I no longer had forty years of medication side effects to worry about.

I fought this battle but only for occasion prednisone. It is worth fighting for considering how poorly you are doing.

Best of luck.

Kay

[Haylz2109 in reply to KayHimm]

Hi Kay, yes well unfortunately because I've been so unstable I haven't been able to work for the last nearly 2 years as my job is a highly stressful, fast paced and high risk factor role which when I did try to go back my symptoms flared up and since unless on steroids I am never stable which causes issues on me to function daily for example I went to bed on a Friday night feeling okish woke up the Saturday and was sick with a migraine for 4 days unable to even keep water down. So I cannot provide them with the requirements of my role currently until I am on some long term treatment that maintains my symptoms. Thank you I've tried having this conversation with her before but it feels like it's always a wait period before anything that helps gets brought into the mix. I even mentioned about the fact that I am unable to work and they are looking for me to return but without a return date for the foreseeable they will have to release me from my role. I've been in the job 14 years this year too so it's quite upsetting in itself to lose it over ill health even though its uncontrollable.

I completely understand the risk side of medication but can also see that I'm already at risk due to having to take continous painkillers just to be able to survive the day and half the time I'm not even managing half the day with the way I am. They know for definite my liver is affected but all liver tests have come back fine including biopsies.

I'm definitely better on steroids the lowest that helps me is 15mg unfortunately anything lower and the symptoms come back in but then again better than when I'm not on them at all as then I flare up again. She was reluctant to give more steroids before I had a scan on my hands but did say she'd get back to me asap but it's been over a week and still nothing now.

I'm only 36 which is why my gastronologist is so concerned about the raised liver enzymes as they're only something you see in an 80 year old or someone with an autoimmune disease uncontrolled.

Thank you for all that information that really helps, it's just so hard to keep fighting when you can barely get yourself out of bed daily and I'm just so drained from always following things up and begging for help. Sorry for the rant I'm just so upset with everything lately and wishing I could be the mum I used to be for my kids which breaks my heart even more.

Thank you again 💕 xxx

[Ellenkay55]

Hello Haylz2109

I’m sorry to hear you have been having so much pain and difficulty in getting help. I have been on both azathioprine and steroids for the last 21 years without any major problems. So if azathioprine is offered it might be an idea to try it but you would need to check that it is suitable to take with whatever other drugs you are taking. Sorry I can’t be more helpful than that.

[Haylz2109 in reply to Ellenkay55]

Hi Ellenkay thank you, it just seems like always an uphill battle. Oh have you ? Thank you for that information that's really helpful. Currently I'm on nothing other than painkillers which aren't helping overall so fingers crossed when I finally have a response off them they can help with getting that organised 🤞🏻 that's been really helpful thank you 💕 xxx

[KayHimm]

You are young! Of course she will be more careful about the side effects. It sounds like you know the level of steroids necessary to keep you stable. That is definitely going to be a tough call for long term treatment. Maybe after all your test results come in, you could have another talk with your rheumatologist about a combination treatment. Even with life-threatened lupus patients they try to get on the lowest dose of steroids possible by adding other powerful drugs.

My heart goes out to you. I know how bad we can feel with perfectly normal bloodwork.

You are a great mom just by being you.

XxK

[Haylz2109 in reply to KayHimm]

Yes I do understand her concerns just frustrating when a plan has been set and for some reason now not being followed. Yes after being on and off them for about 1 year or longer I can see which level of them work for my body best. It is a difficult one because I am so complex and with no specific bloods showing things it's hard for them to know how to treat going forward but I am willing to try anything that could potentially be the one that helps me. Yeah exactly I understand they always want to lowest dose possible especially when it comes to steroids and things. Thank you it just always feels like I'm going back to square one and that just is disheartening.

Thank you I really appreciate that 💕 xxx