What can I hope for?

Hi there, hoping to get to know you all.

In January 2012 I developed pain in a particular point of my right shoulder. After 3 weeks, I saw a GP who said, with my family history and where in the shoulder the pain was, she suspected RA.

She referred me to Rheumatology who in June 2012 confirmed after other joints were affected and after various xrays and ultrasounds that I have a low grade inflammatory arthritis- not wanting to commit to RA as my bloods were all normal. They started me on hydroxychloriquine. My symptoms improved immensely.

3 years ago the consultant saw me (usually reviewed by registrars) and he wanted to take me off my meds but then changed his mind when I mentioned the crunching in my shoulders to do an xray first. I had the xray but whenever I’ve asked what is going on with it, they said they can’t find the xray (which are all held electronically so I’ve felt fobbed off),

In November I was reviewed by the consultant again who took me off my meds and discharged me as well, despite my concerns. Since a throat virus in early January, I have been experiencing a flare affecting joints that I’ve not had pain in since 2012. I have a GP appointment (with a final year medical student) next Friday.

Do you think I will get re-referred to rheumatology? Is it reasonable to ask to go on someone elses list? (My trust has gone with my previous consultant).

Could the GP restart the hydroxychloriquine without referring me? Or might they need to wait until instructed by the consultant?

Naproxen has eased things a little (i have restarted the supply i had when I was discharged without managing to check this was okay with the gp (they never responded to my email) but might they give me something stronger at the moment?

I’m so annoyed with myself that I didn’t put my parts on more when I was discharged. I was just gobsmacked that a consultant would say “aches and pains are normal for someone of your age”. I struggle to get up the stairssome nights, I’m not convinced all 44 year olds do.

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You might have a reactive inflamatory arthritis. Generally if you pick up a cold/virus your body reacts and the inflammatory arthritis flares again. Gp prob will not prescribe hcq as they always say the hospital has to prescribe. So you may have to get another referral to rheumatology. Aches and pains are apparently quite normal according to some useless doctors. Keep badgering your gp. Strangely enough you may find that at 44 you are perimenopausal and sometimes this aggravates inflammatory arthritis.

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Hi lupus_01,

I’ve been suspicious about peri menopause myself for other reasons so wouldn’t be surprised about that.

I work in social care so I’m prone to catching all sorts so if my type is reactive, then I could “react” a lot, lol.

Thanks for replying, it’s useful to have another perspective.

With reactive type, can the joints be inflamed for months? They were when I was first referred to the hospital.

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Yes i think reactive arthritis can last for some months. Ask your gp to check your esr and crp levels as that will show how active your inflammation is at the moment.

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Having been taken off medication myself by a consultant at one period, I can sympathise with the feeling that there isn't enough wrong to merit medication. But your symptoms say otherwise! You need to make the case strongly that this is NOT NORMAL for someone at your young age. Take a record of the time line of your symptoms and a list of how it affects your life. At the very least you should be having investigations to determine the cause and your doctor should be willing to do this.

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(Love the moniker "Grottybags", Grottybags❣️ Very descriptive! ☺️ 🙃 )

Kindly, please don’t accept “aches and pains are normal for someone of your age” as ‘the norm’. 😳

Nip it in the bud 🥀 (as much as possible) now at age 44, rather than waiting for it to exacerbate/ ‘progress’ down the road at 54, 64, 74 . . . 🤯

Merely shared thoughts ( healthunlocked.com/cure-art... ) from the school of hard knocks. 😖🔨

Best wishes to you, Grottybags. 😌 🙏 🍀 🌺 🌞

Your proactive questioning & efforts to help yourself will serve you well. 👍👍

And, the query, "What can I hope for?" comes back to you. ☺️

What can you hope for?

A return to ‘normal’ — a ‘new normal’? 🤔 ☺️

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Thanks for the replies. I am not hoping to ever be completely pain free, I don’t feel that’s achievable or realistic. I would like to think that a realistic expectation is that my symptoms are bought under control again to the point I have had over recent years where I can do a full day at work and still carry on with my social activities without having to leave either work or social early because of the pain. That was the normal I had got used to since my first flare and it’s a normal that I was perfectly satisfied with.

I know this needs sorting. I do not want to end up in a wheelchair (as my great aunt was by 50) or housebound (as my nan was by 55) so I will persevere.

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Very sad to hear, Grottybags. 😔 🙏 [Think quite a few of us(?) who thought pain-free was unrealistic, were proven incorrect. 🤔 Fortunately, we were proven incorrect by our own experience. ☺️ (Sometimes it’s a blessing to be mistaken. 🙏 )] Hoping your achieve whatever degree of symptom control that you believe is realistic for you, Grottybags. 😌 And, hoping it gets sorted, so you by-pass wheelchair & houseboundness of great aunt & nan. 🙏 Yes, perseverance is all we have. 😌 Very best wishes to you. 😌 🙏 🍀 🌺 🌞

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If you did well on hydroxychloroquine I would have thought it's reasonable to aim to be pan free.... and you should certainly aim high and push to get proper treatment.

I hope your GPs appointment on Friday was productive (can't have been a student as not allowed to see people alone, but maybe a newly qualified doctor just starting the practical stages?) and they have re-referred you. So start to gather your ammunition to persuade that you should be taken seriously. At your age this is just not right!

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Hi,

When I booked the appointment (which is this week so not had it yet) I was asked if I’d be happy to see a student doctor who is being supervised by a qualified one. No idea yet what that actually means but I’ll let you know.

With the hydroxychloriquine, I still got twinges in my joints when moving from standing to sitting, doing stairs etc. so I know I will and can live with experiencing discomfort when doing stuff. In fact I want to feel a little something so I’m reminded not to go potty and overdo things. But this is far more than that.

I’m using My Pain Diary to keep track of everything so hopefully a print out of the report off that will help with my evidence gathering :)

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HI again everyone,

Well, my GP appointment on Friday was probably the most positive medical experience of my life, I can certainly recommend seeing a medical student based at a GP surgery :-)

I had a 30 minute appointment and the student was really thorough with her history taking etc. and gave me the most thorough joint examination I've ever had. She said to me that I appear to be a very "auto-immuney person" and I have symptoms that would fit over 3 auto-immune conditions. She could feel the inflammation in my ankles and hips (less so in my knees) and said I had a shawl rash as well (I just thought it was hormonal flushing, as I suspect I'm peri-menopausal).

The qualified GP then came in about 25 minutes into the appointment and the med student did a very professional and thorough handover, saying she thought the hydroxychloriquine should be restarted. The GP agreed and as the consultant had said in his letter that they could restart it, I had a blood test to check my inflammatory markers and kidney function and have been back on it since Friday night.

I'm back at the GP in a month for a review and they'll decide then if they're going to refer me back to rheumatology or not. The GP felt that if they could get it back under control themselves, then that would be kinder to me than going through the hospital and risking being discharged again. He also said if I did have to go back he would try and get me on another doctors list.

When I first started the medication, it took about 3 months to get full effect from it, so I'm hoping that this starts to have an effect more quickly this time but I guess that's just a waiting game....

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