Feeling so fed up 😢

[Kelihunt41]

I recently finished a course of steroids for Lupus (descending dose over 12 days) it feels like the minute I stopped them all my symptoms have come back. I can barely walk and my back, hips and knees are in agony. I'm having trouble sleeping through the night and am fed up with keep going to the Drs. Things are really getting me down now. I start a new job on Monday which I know is really good but will bring a certain amount of stress which will exacerbate things. Had enough now, sorry about the rant. Xx

[Treetop33]

Is this for Lupus? Are you on any other meds?

[Kelihunt41 in reply to Treetop33]

Hi! Yes it's for Lupus. I had to fight to get them as my GP wouldn't prescribe them. Only after my rheumatology nurse told them to did they relent. To say they changed my life in those 12 days is an understatement. Felt like I got my life back. Now back to taking gargantuan amounts of co-codamol to relieve the pain. Just fancied a moan! Xx

[Treetop33 in reply to Kelihunt41]

It's quite odd that's all they gave you. I've got a recent diagnosis too and they put me straight on 400mg hydroxy and 30mg pred taper. Three months later I'm still on the hydroxy (of course) and 5mg pred.

I was without meds for three months and the pain was awful - some days I couldn't walk. OTC painkillers didn't touch the sides.

Do you have any idea why they won't sort out long-term meds for you?

[Kelihunt41 in reply to Treetop33]

My rheumatology consultant was completely disintested. They have got a new job so completely checked out if you know what I mean. However the rheumatology nurses are fantastic! But it's a constant battle between them and my GP!! It got so bad I had to pay to see a private GP to help me get the steroids. I think maybe once I have a new rheumatologist it might get sorted!

[Treetop33 in reply to Kelihunt41]

That sounds very frustrating. Some docs seem to have a empathy bypass when it comes to AI stuff. Hope it all works out for you x

[Paul_Howard Partner LUPUS UK in reply to Kelihunt41]

Hi Kelihunt41 ,

Are you able to get hold of the rheumatology nurse and let them know that you symptoms have flared up again following the end of your course of steroids and see if they can encourage your GP to prescribe more for the time being?

As others have said, steroids aren't a long-term solution and so your rheumatologist should be looking treatments for your lupus. Would you consider asking your GP to refer you to a different consultant for a second opinion?

Good luck with your new job next week! Are your new employers aware that you have lupus? If you need any information about your rights in the workplace and support that is available, we have some guides which you can read/download at lupusuk.org.uk/working-with... - If you need physical copies posted to you, please just send me a private message or email [e-mail] with your name and address.

[Mandypandy1969 in reply to Kelihunt41]

I had the same thing happen to me. I felt like a new woman on steroids. I have all the aching and lethargy back. don't want to do anything, so depressed. seeing rheumatologist next Wednesday. I feel I may have fibromyalgia and not lupus. I am forgetful, clumsy and feel I don't have full concentration on stuff, like driving. I haven't done much driving lately as I don't feel confident anymore.

[CRYSTAL11 in reply to Mandypandy1969]

You can have both. I have multiple auto immune deaseases they all seem to go together. Not to sure what relates to what at times. Keep fighting love that’s all we can do xx

[Mandypandy1969 in reply to Kelihunt41]

I was on steroids for a month. 20mg for a week then tapered by 5mg each week then had to stop after the 5mg. when I got down to 10mg, symptoms started coming back. haven't been out in anything else. I have had to wait 5 months for a 2nd appointment after being diagnosed with suspected lupus. I have read up on lupus and I don't have that many symptoms. my symptoms seem to be more on the lines of fibromyalgia. I am forgetful, no concentration level and aching muscles all over. no energy much at all and have got very depressed. for 1 month I felt great. the last few months have been awful and feeling so low as have no interest in things whatsoever. don't go out much as don't want people to see me miserable.

[jennyall12]

Sorry to hear what youre experiencing. Lupus can definately cause a certain amount of stress emotionally and can wear on us. Did you call the doc and let them now the steroids didnt have a lasting effect and the symptoms are back? At times we feel so powerless with this cowardly condition, but we can control our reactions and choose to think positively about us getting better : ) Thats great you have a new job starting .. Congrats and good luck on your job! Try to keep your head up!

[Kelihunt41]

Thanks all just having one of them days. Xxx

[Tonk]

Kelihunt41

Hello to you.....It sounds as if your team may be letting you down.

Have you considered changing your GP?

Hopefully you'll get a keen and enthusiastic Rheumy consultant, who will sort you out. It does indeed sound odd that only the steroid was prescribed, most of us were put onto hydroxy pretty much at first opportunity after diagnosis.

I have never been able to get completely of prednisolone since starting it many moons ago indeed, below ten mgs I become too ill and in too much pain to do much at all.

Be careful with the co-codamol as this can be very addictive and may lead to nasty withdrawal symptoms after prolonged use at higher doses.

We all get down over our condition, especially during the period just after being first diagnosed with the illness.....That's only natural and also, most of us have had periods when we have felt ignored and worthless whilst the specialists "experiment" with the medications they wish to solve our problems with......I know this doesn't really make you feel better but try to remember you're not completely on your own when you've got the members of this forum to talk with.....Feel free to have a rant anytime

Take care and good luck.

[Tonk]

Kelihunt41

Sorry, one other thing.....It does pay to keep a symptoms diary where you list how you feel, any changes, mood, pains and anything else you think is relevant.....You can present this to your GP and specialist so they can see evidence of how it affects you both in terms of physically and mentally. It may also show how it affects your life quality.

Many days the entries will be similar but, always write it down.....It will also help you to see if there are patterns to your condition and whether you're making progress or going backwards.

[Kelihunt41]

Many thanks Tonk! I have got a lupus diary just feeling frustrated today! Will try and get a better nights sleep tonight. Thanks for listening! X

[CRYSTAL11]

Did you stop them suddenly or taper down. If you stoped suddenly then it will all feel awful for quite some time. You will need to reduce slowly so your body can adjust xx

[Purpletop]

12 days taking steroids is not enough for a flare, I don't understand what that rheumatologist is thinking about. Particularly if your symptoms improve with them, it's a good sign that inflammation is high and that it needs a good whack!

[Bakbre]

Hi there

Change your GP immediately! By the sound of it you need to go back on Prednisolone.

As soon as I was diagnosed 13 years ago I was put on Hydroxychloroquine. Over the years I have been on various other medications (Methotrexate, Azathioprine, Lefludomide etc) all with varying degrees of success and have been put on Prednisolone tapering quite a few times to get me over bad flare ups. I too have had some Consultants who were less than brilliant as I am sure most people on this forum have as well!

Since November last year I have been on Pred tapering down from 20mg a day for a month, then 17.5mg a day for a month and so on. I was okay until I got to less than 10mg a day and everything came back. My Rheumy told me to keep it at 10mg a day until my next appointment with her which is in 2 months.

My point in telling you all this is you do not need to put up with this unsympathetic and unprofessional GP & Rheumy.

Is it possible for you to speak to the PALS office in your hospital and let them know what is happening with your rheumy ( who needs a kick up the backside by the sound of it!). Also change your GP and/or complain to the medical council about your treatment/non-treatment from him.

Once you get a good rheumy you shouldn't have has much difficulty in getting your GP to prescribe the medications you require.

I hope you feel better soon - good luck.

[Sfigata]

It does you good to have a rant now and then!! I don't live in the UK so I don't have these problems that I see a lot of you do, getting medication. I also have Lupus, now nearly 30 years. So when I have a flare up, I just go to my g.p. and he prescribes me prednisone. As you say, whilst you are taking them, they are a miracle, but as soon as the effect wares off, back to square one. The reumatologist wanted to change this, thought it would be better to take adaily 5mg, instead of 20mg for 10 days up and down. but upped the dose of immune suppressors from 2 to 3 a day. plus integrators for vitamin D and calcium. have been very depressed over the last year, have also put on about 15kgs which doesn't help with your self esteem. Obviously difficult to do any exercise due to the pain. If they suggest Plaquinil, an anti malariac, DONT go down that street!! It caused me an iridite and I nearly lost my retina. Just to top it all, <i have haemocromatosis, and fybromialgia, so the pain can be due to any of the three .

[ange726]

Hi Kelihunt.

I was on Pred for 6 months! (2 stone heavier) Similar to you for 5 glorious weeks I was pain-free and then one day I decided to do a 30 min walk instead of 15 mins (stupid me) and my acute pain came back. They tried putting up the dose but nothing worked. Been on hydroxy for 9 months now and also taking Tarpentadol which is morphine bssed which dulls the pain if I don't do anything. Like you I start a new and exciting job but it's tainted with telling my new boss about my lupus. Worried he will think im a problem admin case! I totally feel your pain and frustration. Sorry for the ramble but maybe investigate other meds or just scream really loudly (I sing really loudly which sometime helps)

Please let me know how you get on with your new job on Monday and I'm here (as is all these other wonderful people) if you want to vent

Axx

[Kelihunt41 in reply to ange726]

Hi Ange

Thank you so much for the encouraging words! I really appreciate everyone's kind words of advice. I am currently waiting to go on azathioprine which in know will come with its own set of problems/side effects. I've had to change career as I can no longer stand (I used to work in a lab). I have a desk based job now which should help massively!

Good luck with your job!

K

xxxx