Steroid situation update

[Mifford]

Hi everyone. I was trying to find my post asking for pros and cons of prednisone so I could update it with the outcome of my rheumy appointment but in the end gave up so hope it’s ok to start a new thread.

I talked to my doctor about the possibility of trying pred but she won’t hear of it at the moment. As steroids would be long term use she’s concerned about the downsides (what with methotrexate being such a nice friendly drug!) - first thing out of her mouth was it’ll make me gain weight. I told her I’m prepared for that and already following slimming world so can be extra careful to minimise it. Plus having had a depomedrone injection 2 weeks ago I lost 5lb immediately afterwards!

Basically because I have no organ involvement she doesn’t think steroids are the solution. They will make me feel better (sounds good to me!) but I don’t need to go down that route yet - I bit my lip from pointing out that I’d quite like to be treated to ensure I don’t get organ involvement rather than reacting after the event. Instead she’s now trying me on mofetil [mycophenelate) starting off incredibly slowly and seeing if I tolerate it.

I mentioned that most of my issues are shoulders, hips and neck and mentioned a lot of it fitting PMR but she told me I’m too young for that to be possible ... I’m 47 so I’m not as sure as she is on that one! She suggested it could be osteoarthritis although there’s no evidence at all to back that up. I do think she was having a bad day though as she’s normally very open to discussing options but seemed quite defensive this time.

So the outcome is no steroids (yet) but she is sending me to dermatology separate to my Guys photosensitivity appointments to look at the Lupus skin angle and is running a whole load of fresh blood tests to see if there is a reason methotrexate has stopped working such as menopause, checking my diabetes levels etc. She’s also accepted that my quality of life has to come in to the decision as well and has said that if I can’t tolerate Mofetil we can discuss steroids as the only option left that we haven’t tried. She did say she would only consider it after a fully frank and informed discussion though - I replied too right as I have no intention of jumping in without knowing what I’m jumping in to! I didn’t over stress it this time but I do feel that this should be MY decision in exactly the same way as it was when the previous doctor tried to palm me off with steroids and I refused as they weren’t right for me at that time. It’s me that has to live with it either way and as long as I’m fully aware of what I’m deciding I really don’t think someone who doesn’t have to deal with the consequences should get the ultimate say in either direction.

So, apologies for the long post but I wanted to update and come back and say thank you to those who responded before. It really helped me gain a more balanced picture which coukd prove very helpful in the long run x

[SheffieldJane]

Well done for taking charge. I do hope you get relief soon. You are very clear and make perfect sense.

[Mifford in reply to SheffieldJane]

It took 15 years from when I was first ill to get my thyroid diagnosed and a further 6 years after that for the lupus diagnosis. I realised long ago that keeping quiet meant I was the one that suffered and educated myself enough to be my own advocate as no one else will. I’m not sure the doctors always appreciate it though lol

[Hidden]

Always best to do a New Post as an Update, so more people will see it.

But if you ever need to find a Post you’ve written look on ‘My Profile’ & select Posts or Replies, hope that helps.

MrsN

[Mifford in reply to Hidden]

Thanks 😊

[dar58]

I loved your post and the way you take charge for your quality of life. Please be very careful with the steroids. I had a lot of faith in them for many years. As the disease progressed and the flares became worse, we advanced to solumedrol IV. I had no problem with them and it would stop the flare up in it's track. I was in the hospital and was getting my usual does and suddenly I wasn't myself, I thought everyone was out to get me. It was crazy but I had a very bad reaction called steroid induced psychosis with hallucinations. My body reacted so bad this time that I was told I shouldn't have it again. I don't plan on going through that again as it took almost 2months to get it out of my system. Please watch for any reactions if you ever consider IV steroids.

[Mifford in reply to dar58]

Thank you dar58. I have been in two minds over the possibility of starting steroids for reasons such as this and have resisted them until now. I’m not totally convinced my lupus diagnosis gives the full picture and adding steroids in could very well mask anything else going on too which is another reason I’m wary.

I’m now at the stage however that the photosensitive element of the lupus is so strong it’s having a huge impact in my life. The lupus is relatively stable and staying just under flare levels but it doesn’t take much to tip the balance and I’m keeping it lower by barely leaving my house. If I go down the steroid route, and it is still very much if, then I’m hoping that we can get me on to a very low maintenance dose only which reduces some of the risks such as your own experiences.

The fact I’m not in need of hospital treatment is putting the consultant off as medically my flares are not a problem. I get hideous migraines and my body currently attacks tendons and muscles etc. All very life limiting but not life threatening. My concern is that to keep letting these mini flares slip and the lupus to stay active even at a low level it is playing Russian roulette and one day I may have no choice but to go the IV route to prevent more medically serious problems and then the risk greatly increases.

Thank you for sharing your experience though as all input helps me make a more informed decision

[Louisepenygraig]

I've lost weight since I've been on steroids by following a calorie counting diet and then, more recently following slimming world so weight gain doesn't necessarily follow. Since Ibe been prescribed amitryptaline now for my Fibromyalgia, which is another drug which makes weight loss difficult, I've found it harder but once the weather gets better I think I'll get back on track. I've not had any problems with the steroids except for my initial dose of 20mg which made me hyper! I was only on that dose for about 2 weeks though and was fine on 15mg

[Mifford in reply to Louisepenygraig]

Oooo I didn’t realise amitryptaline caused problems with weight - I take it intermittently for when my sleep level gets so low and fatigue level so high due to pain waking me up at night. I will keep an eye on that. Thanks

[Louisepenygraig in reply to Mifford]

If you're only taking it intermittently I wouldn't have thought it would be too much of a problem

[Jackoh]

Always difficult isn’t it when you have quite a few issues going on. As Mrs Nails said you can look back and see your post ( as she described) I have looked back and see you had a really good response. Good though that you are keeping folk updated and that you seem very in tune with what is generally happening to your body. Let us know how you get on. Best wishes, Jackie

[Mifford in reply to Jackoh]

The replies were really helpful. I’ve only ever been given the horror face at the idea of prednisone so it really helped see both sides of it to help me be better informed to have a full discussion on it when it gets to that stage. It was very much appreciated.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

if you want to look back! And add your update to it as well for completeness (what I would do)

The list is on your profile page healthunlocked.com/user/mif...

which you can access by clicking on the emoji at the top right corner of the page (the one with a pink pred moonface )

I do worry a bit about blinkered doctors who can't see that quality of life NOW is as important as (maybe) QOL in years to come. Whatever you should be on, it should be a medication that actually allows you practical advantages now. I've been on pred for 9 years, 9 years of being able to live a normal life. There are doctors who would have a fit - but I'd rather have the 10+ good years now than risk what may happen later than have no QOL now.

[Mifford in reply to PMRpro]

Thanks - I’ve added the link on the other page for anyone following or who comes across it on a search and wants to cross reference.

I’m coming to the same conclusion. I may get to 70 with hips that don’t need replacing but spend the next 23 years in pain with them, unable to walk without crutches, constant migraines and unable to tolerate artificial lighting to the point that I can’t do anything remotely normal. Even shopping in a supermarket is becoming intolerable due to the migraines it causes. Or I can be crippled at 70, which is likely to be the case anyway the way it’s going, but have had 23 years actually having a life and enjoying it to some degree.

This illness already took most of my 20s and 30s being pinged from doctor to doctor and misdiagnosed 4 times along the way. My 40s so far have been various drugs making me sick, joint pain all over the place and steroid injections at least twice a year but often more and steroids stuck into joints to fire fight the latest problem as needed. A year of frozen shoulder pain alone was enough to almost sink me. I’ve not reached this stage easily and have fought steroids along the way when I’ve felt they’ve been the wrong answer at that time. But when I get to the stage where I say I’ve reached my limit I’ve REALLY reached my limit. I’ll give mycophenelate a good shot but if I can’t tolerate it I think she’ll have trouble persuading me that pred still isn’t worth a try - even if only to get me down to a more “normal” level so we can try and get one of the other options working better.

[PMRpro Ambassador in reply to Mifford]

Is there no other option besides her?

[Mifford in reply to PMRpro]

Believe it or not she’s actually the best of the lot lol. To be fair she has been very good at working with me instead of at me until now. She was running an hour late this week so I’m thinking she may have been having a bad day and would have worded it better normally.

It’s a tricky position for her as she has to advise what she thinks is best in the long run from a health point of view. She has said if the tablets she’s prescribed don’t suit me there is another version that they don’t ususlly prescribe that she’d be willing to try for me and she has booked me in with the nurse as soon as possible (2 months even though she wanted 3 or 4 weeks unfortunately) to make sure I’m not left unsupported for too long so they can see how it’s doing. If they work then I’ll be very happy but based on past experience I’m very sceptical whether they will.

I do think that she’ll stick to her word and discuss it fully if this doesn’t work as there won’t really be anything left to try. If she doesn’t I’ll ask for a second opinion. If she does then I’ll point out that she has control over my life and daily pain levels etc so my quality of life is on her shoulders and that usually does it lolol

[PMRpro Ambassador in reply to Mifford]

All the best xxxx

[YuliK in reply to Mifford]

Is it not possible to give your Doctor a link to this forum ?

You really have had quite a tough time.

I hope your Doctor will help you feel better quickly.

Yulik 76

[Gosingen]

I had a request to respond to your post as I've had experience of MTX. I have, but onl, so I minimal so I don't think my reply will be of much help. I'm a long term steroid patient, have PMR and GCA. We tried MTX to see if I cld reduce my steroids to an acceptable level. Unfortunately, despite going for the injections, the drug had adverse side effects, so I had to discontinue after a short trial - it's quite a long time ago now, so can't remember exactly how long, maybe a couple of weeks or so. Wish you all the best with your treatments.