Mycophenolate or Azathioprine ?: Hi friends, Some... - LUPUS UK

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Mycophenolate or Azathioprine ?

Spotty-ewe profile image
36 Replies

Hi friends,

Some of you will remember that in February I had an intolerably itchy rash my Rheumy didn’t recognise as being a Lupus rash but was confirmed by Dermy as such. After being on Prednisolone for a total of 7 weeks tapering down by 5 mg per week, my poor innards were screaming. I couldn’t eat anything without suffering severe pain in my chest through to my back and couldn’t sleep lying down for the same reason. So I got to dread eating and sleeping. 😩 My GP swopped my Omeprozole for Esomeprozole which together with a bland diet helped a lot.

We had a holiday booked to the Hebrides and if we’d been able ot get our money back if we cancelled I would have done - I felt so rotten. But we couldn’t so we went and luckily as long as I stuck to the bland diet I coped. We had lunch out one day and I suffered for it, so that was the one and only meal out. However we enjoyed the break and the scenery was fabulous.

BUT to my horror the rash began to return on my hairline 😳 and around my ears then onto my torso.🙄 As soon as we were home I contacted our Rheumy helpline and got an appointment with Rheumy a few days later. This time he listened to all I had written down and took a few notes himself from what I told him.  He then said that it was clear I’ve not been well for a long time and that my condition is yo-yoing with the recent Prednisolone temporarily suppressing the Lupus but not succeeding in putting me back in remission with the result that as soon as the long course of steroids stopped it began to return in the form of the rash.  He said we can all see this Lupus activity but what is going on internally?  Good question! As a result he said he wants to put me on something stronger than Hydroxychloroquine, which no longer seems to be working effectively, and is a dangerous drug itself to stay on long term on high doses because of the risk to our eyes.  He said high doses of steroids are not safe to stay on long term either so he’s recommended I start either Mycophenolate or Azathioprine, both or which are immunosuppressants. He said they of course come with potentially nasty side effects some of which he went through with me, but he said that to do nothing is not an option.  The Lupus must be controlled otherwise it will do far more damage than any of these drugs.😳

He has given me leaflets about the 2 drugs and said if I wanted to think about it and decide which I’d like to try he would give me a steroid injection to control the Lupus for a while until I decide what to do.  The nurse weighed me so he could work out how much steroid I was to get and then I had the routine blood tests and urine test.  The nurse gave me the steroid injection before I left.  

So here I am wondering what to do. When I was hospitalised with drug induced hepatitis in January (thought to be due to long term prophylactic Nitrofurantoin) I was taken off my Hydroxychloroquine for a month when the first rash started. I’m wondering if being taken off the Hydroxy is what gave my Lupus free rein to attack me. 🤔 Now I’m back on it (2 tablets per day) and I had the steroid injection 10 days ago, I’m wondering if I really need to go on an Immunosuppressant?🤷🏼‍♀️ My rash is slowly dying down although one or two new spots have appeared on my upper arms.

If I do have to go on one of the drugs has anybody experience of being on either Mycophenolate or Azathioprine to help me decide which one to try? Any experiences and/or advice would be greatly appreciated.

Hoping all you lovely Lupies are keeping as well as can be, and enjoying the good weather, even if not the sunshine!😉

Take care. 🤗😘 xx

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36 Replies
Choccy8 profile image
Choccy8

Hi Spotty-ewe,I took Azathioprine briefly. You had to pop out the tablet into a little cup to avoid touching it with your hands, because it's cytotoxic, which was a bit disconcerting! It made me very nauseous, so I have to admit I didn't give it much of a go! I think it was offered first as it was an older drug (also probably cheaper) but rheumy said if it makes me feel sick I can try Mycophenolate, so I did!

I've been taking that since, apart from a time I went off it because I felt I was getting shingles. Used to take 2g daily, now 1.5. Side effects of mild nausea, loose bowels, but not too bad. I did use to get infections more often at the higher dose.

It does help. Recently increased the dose from 1g, and notice the difference in my mental health, less anxiety and depression, and muscle pain/headaches better.

Hope this helps x

Spotty-ewe profile image
Spotty-ewe in reply toChoccy8

Hi Choccy, I don’t like the sound of the Azathioprine - sounds lethal. 🥴 No wonder you didn’t give it much of a go. Good to hear the Mycophenolate was a bit easier to tolerate and has some real health benefits. Thanks so much for that info Choccy. Very helpful. 👍🏻 Take care. Xx

Hi Spotty, sorry I can't advice on immunosuppressive, as only been on Hydroxycholoroquine and short courses Prednisolone, but re: Nitrofurantoin, I'm getting bad reactions. Don't really ever want it again. Seemed to cause terrible pain under diaphragm, could not lie on front. This has happened 2 out 5 times prescribed it...so think it happens when I'm flaring.

Also agree with you, being off Hydroxycholoroquine a month, could have contributed, particularly in summer months .

Spotty-ewe profile image
Spotty-ewe in reply toStriatedCaracara

Hi SC,

Good to hear from you and interesting to hear about the side effects you have had due to Nitrofurantoin. My GP was very angry that the hospital took me off my Hydroxy yet kept me on the Nitrofurantoin when he was certain it was the cause of my severe liver problem. He said it was well known that it could cause liver problems. Because my liver readings were off the charts he has put on my notes I’ve never to have it again. So strange it did this when I’ve been on it as a prophylactic for 6 months of the year, alternated with Cefalexin, for many years now. So odd it decided to cause a problem this January. 🤷🏼‍♀️ I hope you are keeping OK just now SC.🤞 xx

Barbara17 profile image
Barbara17

Hi Spotty. Sorry to hear of your troubles. I agree with you that temporarily stopping the hydroxy has allowed the lupus to flare. When I first started on mtx my dermie told me to stop the hydroxy and my skin broke out big time. I went back on hydroxy and mtx plus prednisolone and it began to settle. Although it took me almost two years to taper off the pred at 0.5mg per month! I still keep some in reserve for unexpected spots. I saw my dermie a couple of weeks ago and she has agreed I can start to try and taper the hydroxy over the winter months. Down to one 200mg tablet a day, provided my skin is clear before I start. It really is a balancing act. Perhaps a dermatologist could advise you rather than a rheumatologist? Good luck.

Spotty-ewe profile image
Spotty-ewe in reply toBarbara17

Hi Barbara, Good to hear from you again. I remember you had such a terrible time with your rash when I first joined the forum and that it took an age to clear up. I felt so sorry for you. So it is good to hear how you faired when your Hydroxy was stopped. From what my Rheumy said I think he’s planning to take me off the Hydroxy too, and I’m not keen on that idea - even less since reading what you said. 😳 I have a dodgy mole on my forearm which my GP is going to look at on Thursday and having had a malignant one when I was in my 20s I’m hoping he’ll refer me to a dermatologist 🤞. I recall you had another serious health issue too. I hope that is under control now.🙏🏻 Take care Barbara and thanks for sharing your experiences. Xx

Tiggywoos profile image
Tiggywoos

hi spotty so sorry you’re having such a rubbish time of it 🙁. Wanted to send you a hug 😘.

For what it’s worth my husband was on aza albeit for IBD . It worked well and he had no side effects but they had to take him off of it as it affected his liver and reading were through the roof🙈 . From what I gather it is one of the cheaper drugs . He also had awful rashes on his arms while on it . These did go away and liver went back to normal within 6 weeks .

Good point you make about hydroxy as whenever I try and drop down from 400mg to 200 mg I always notice a difference in my rashes . Yours look just like mine from a few years ago so I do sympathise 😔. I would push for dermatologist as from my previous experience rheumatology not interested in skin rashes . Good luck with your appointment next week and if you feel up to it let us know how you get on xxxx

Spotty-ewe profile image
Spotty-ewe in reply toTiggywoos

Hi Tiggy,

Thank you so much for the hug - always appreciated. 🥰 Thanks for the the info re your husband’s experience with Aza. I have heard before it causes liver problems in some people so I think I’ll steer clear of that. Yes, it shows how well Hydroxy works because I too have had flares when the dose is dropped. A few years back my old Rheumy dropped it back to one on Mon, Wed and Friday each week and I lasted all winter and most of the summer like that but then had a flare in August. Similarly last year I dropped to one every alternate day and then all the Lupus symptoms worsened until it all came ot a head last December/January. It is such a pity it is considered a dangerous drug with the potential of damaging our eyes. Otherwise I’d happily stay on it forever.

Good idea to push for a Dermy appt. I’ll see if I can persuade my GP to do that when he looks at my mole tomorrow. 🤞 Thanks for your kind wishes Tiggy and here’s a hug back for you. 🤗 Take care. Xxxxx

RachelD1972 profile image
RachelD1972

Hi, I’ve been on hydroxychloroquine and am currently on azathioprine. Hydroxychloroquine can cause extreme sun sensitivity and it made my skin a lot worse. I ended up coming off it. Im tolerating azathioprine ok and it controls my RA quite well but my discoid lupus is still a challenge. Dermatology have now added Mepacrine but not seeing much of a result yet. You’ve got to weight up quality of life against potential side effects. Do make sure you are using a good spf, I’ve found altruist very good and reasonably priced. I hope it settles for you soon x

Spotty-ewe profile image
Spotty-ewe in reply toRachelD1972

Hi Rachel,

Pleased to hear the Azathioprine is helping your RA and that you tolerate it well👍🏻 but sorry to hear your discoid Lupus is still troublesome. I hope your Dermy comes up with something that works well for you soon. 🙏🏻 It sounds like I need to see a Dermy so I’ll see if my GP will refer me. 🤞 Thanks for your advice re a good spf. I’ve noted Altruist and will ask my pharmacist about it next time I’m in. Thanks again Rachel. Look after yourself. Xx

PositiveT profile image
PositiveT

Hi. Sorry you are going through such a very debilitating and upsetting time. I have tried Methotrexate, Hydroxychloroquine and Mycophenolate all of which I had allergic reactions to. I too had horrendous rashes all over, referred to dermy who advised I am allergic to the above drugs. I would like to mention that all of those medicines also have some possible severe side effects including damage to eyes and sight.🙄

I am on Azathriopine. I have been taking it since I finished Cyclophosphamide infusions two years ago this August. This saved my life. I'm not sure what pills Choccy8 were given but I take three 25mg Azathriopine every day and it is not a problem to touch them. It does not say anywhere in the pill leaflet nor did my consultant /nurse say that is the case.

You do need to take them with food to stop the nausea. I have a banana every morning and then take them with a cuppa. My experience of the nausea has been very rare. The Azathriopine is definitely helping me lead a semi normal life! Able to do some light swimming, I walk every day and am increasing my fitness. For me this drug works extremely well. I have Riaxthon (Rituxumab) infusions every six months if needed. Four weeks ago I was flaring so I had an emergency steroid injection. I tapered off of Prednisolone completely on 31st January this year! No doubt you know that Prednisolone is another drug which is very damaging long term - liver, kidneys to name just two.

I hope this helps you with your decision making. If you have any questions specifically please do message me and I will do my best to answer them.

Good luck and please do let us know how you get on. Together we can all help each other on our journeys.

Take care and I truly hope you feel better soon.🌻

Spotty-ewe profile image
Spotty-ewe in reply toPositiveT

Hi PT,

Thank you so much for your very informative reply. I’m so pleased to hear the Azathioprine is making such a difference to your life. I’ve had to give up swimming, Scottish Country Dancing and even Pilates and Yoga all of which I loved due to recurring UTIs in the case of swimming and arthritic shoulder and sacroiliac in the case of other activities and classes I enjoyed. I do try to walk daily however if my fatigue isn’t too bad.

Yes, Rheumy stressed the dangers of Hydroxy long term and steroids too - it is a bit of a catch 22 isn’t it? You have certainly given me a different perspective on Aza and plenty of food for thought. Thanks so much for that PT and thanks too for the offer of getting in touch if I have any questions. I appreciate that.

Take care and good luck with your fitness regime. Most of all enjoy yourself. 🤗🌷🐝

CSLO profile image
CSLO

Hi Spotty-Ewe

I have been taking Mycophenolate for a few years without any side effects at all, none. I also take 400 Hydroxy and need 2-3 Depo Medrone jabs a year (they are nothing short of miraculous - so glad they are working for you).

I'm not on a massive dose of Mycophenolate (150) but given that I break though with sun, heat, exertion, stress etc it's looking like I may have to increase the dose of Mycophenolate as my rheumy doesn't really want to increase the Depo Medrone jabs.

I have the attitude that I will try things if there's a chance I can remain upright(!). We can't know til we try and we all of us react very differently to things. I wouldn't hesitate to try the Mycophenolate in your position.

As far as the Hydroxy causing problems with the eyes, I'm assured that it's rare and as long as annual retinal screening is done there should be no worries about taking it. It helps the other meds to work too. Do insist that the rheumy refers you to Ophthalmology for the annual screening to be done.

I know taking new meds is scary but give it a go, you've struggled so much this needs to be taken into hand.

I wish you well.

Spotty-ewe profile image
Spotty-ewe in reply toCSLO

Hi CSLO,

What a journey you’ve been on yourself and thank you for sharing your experiences with me. I’ve also been open to trying different drugs but have come a cropper several times leading to severe flares or drug induced hepatitis as well as a few allergic reactions as in the case of Terbinafine, trimethoprim and Septrim. Hence my reticence. But it sounds like Mycophenolate is worth a try. I’m so pleased it has worked so well for you, and with no side effects. That is fabulous.

Yes, I have annual screening both with my optician and I’ve twice had screening with Ophthalmology but due to cutbacks in our region the latter is rare. The Rheumy seems more concerned about me staying on Hydroxy than I am. I’ve been on it for 11 years now, with fluctuating doses according to the season, flares etc.

Thanks for your kind wishes and I hope with the help of your Mycophenolate and steroid jabs you’ll continue to keep on top of your condition and keep as well as can be. Best wishes. Xx

Barbs51 profile image
Barbs51

hi Spottyy-ewe, I’ve been on mycophenolate since 2017 and no problems it’s doing the job and I’m grateful for it. I have primary Sjogrens with lung involvement. Best of luck 🌺

Spotty-ewe profile image
Spotty-ewe in reply toBarbs51

Hi Barbs,

So pleased to hear Mycophenolate is working so well for you as it is for a few others on here. It has given me a bit of confidence to give it a try. Thank you so much for sharing your experience of it. Wishing you all the best. Xxx

svfarmer profile image
svfarmer

hi spotty I’m so sorry you are experiencing this horrible rash at the moment and what a shame that you couldn’t really enjoy your holiday, I’m on methotrexate and have been for 6 years now with no side effects whatsoever so can’t comment on the 2 meds that rhemy has suggested.

Sending big hugs from me and Bea & Mira xx

Spotty-ewe profile image
Spotty-ewe in reply tosvfarmer

Aw thank you SV for the much appreciated hugs from you and your lovely girls. 🥰 Thanks too for letting me know how well you get on with Methotrexate as I might suggest it to Rheumy if I don’t tolerate the drugs he’s suggested. Hugs back to all of you. 🤗😘 Xxx

Bee_E profile image
Bee_E

Hi Spotty-ewe,

I’m so sorry to hear that you have been having such a bad time. I was diagnosed with SLE with lung difficulties in 2017. I was given 200mg hydroxychloroquine and 2g mycophenolate. I was taking prednisolone anywhere between 15mg and 7.5mg as well. I have reduced the prednisolone to 10.5mg hydrocortisone now due to side effects. But I had no reaction to mycophenolate. It is an immunosuppressant so infections take longer to go and are a easier to catch but the LSE is well-controlled. We haven’t quite cracked the joint pains that have re-surfaced since the steroid reduction but there is always something with this unpredictably spiteful disease that we share.

Love and hugs 🤗

Bee 🐝

Spotty-ewe profile image
Spotty-ewe in reply toBee_E

Hi Bee,

Thank you so much for sharing your experiences with me. I’m so pleased to hear the Mycophenolate is working so well for you and with no side-effects. Yes Rheumy and Dr Google did inform me that infections would be easier to contract and harder to get rid of which does worry me a bit. But better that than feeling lousy all the time.😉 I hope you get some relief from your joint pains soon. My arthritic shoulder has been very debilitating but the steroid injection my GP gave me has helped enormously, but he can only give them so many times. But as you say there is always something with SLE. My hubby says it is the disease for people who love surprises! I could think of nicer surprises than what it throws our way!🤣 Take care Bee and thanks again for your helpful and reassuring reply. Xx

hopegalore20 profile image
hopegalore20

Hi Spotty-ewe, I have been on Mycophenolate Mofetil for a good number of years now. I take 3000mg per day to supprest my immune system. I was once on Hydroxycholoroquine, but it did not agree with me.

I hope from all the responses received and advice from the medical professionals that you come to a decision on the best drug for you.

Good Luck. 👍 x

Spotty-ewe profile image
Spotty-ewe in reply tohopegalore20

Hi Hope,

Good to hear you have been on Mycophenolate for years without an adverse reaction. 👍🏻 Thanks for sharing this reassuring info with me which makes it much easier for me to make a decision now. Take care Hope. 🤗xx

Turquoise-1 profile image
Turquoise-1

Hiya Spotty-ewe,

Sorry, lost touch …. Life stuff, health issues, never ending challenges every month this year…not had that many ‘good days’ ….. you get the gist 💞

Horrid rash & times for you 😢

Great question with some helpful answers as Mycophenolate or Methotrexate have been suggested for me, not said, “Yes” yet though!…… My Hubby had terrible experience with MTX (doesn’t mean I will).

I’ve recently started using Dermovate Scalp Treatment, prescribed by Lupus Nurse….Wow!! After years of suffering, being told, “No, there’s nothing I can give you” by GP, I finally have relief on my scalp ….. Hooray!

I really hope you find something to give you relief,

Warmest wishes to you 💝

Spotty-ewe profile image
Spotty-ewe in reply toTurquoise-1

Hi Turquoise,

No need to explain - stuff happens. I know exactly what you mean. Just relieved it wasn’t something I‘d said.🤣

Glad the post has proved useful to you too with the very helpful answers. And thank you for telling me about the Dermavate Scalp treatment. I’ll ask about that because my scalp has been affected too - it just doesn’t show. But I’ve been terrified to use a hair dye since January until it all settles down again - so I’m not a pretty sight at present. 🥴 But I guess that’s the least of my worries. With having to wear a shady hat, sunglasses and a mask if in public places I doubt if anyone sees all my blemishes and grey hair anyway. 👍🏻

Hoping you are keeping as well as can be. Must have a catch up when we both slow down to a gallop again. 😆 Take care Turquoise and thanks again for the scalp treatment info. 👍🏻 xxx

Turquoise-1 profile image
Turquoise-1 in reply toSpotty-ewe

Oh Spotty-ewe

I can assure you it’s definitely not due to something you’ve said 🤗, quite the opposite as I’ve had many an enjoyable chat with lovely you 💞

I was very sceptical about the Dermovate Scalp Treatment as I thought it would be a cream - how on earth could I get that on my scalp? Shave my head? I’m a hat wearer (all year round - feel the cold in winter & sun protection in summer), super thin hair - look a state! Lol…..

To my surprise, Dermovate Scalp Treatment is a liquid in an easy to dispense bottle, just part my hair & drip it on! It runs so spreads itself & it actually works without making my hair sticky or greasy …. Oooohhh the relief is indescribable 😃

Saw an awful Dermatologist a few weeks ago for results of 3 skin biopsies I had in January. Precancerous keratosis removed from my scalp plus an area on my face….beats me how I have sun damage? As a child my Mum was strict regarding SPF/hat, continued excellent skin care & hyper vigilance/sun-safety eversince, wear SPF all year round….don’t even enjoy being in the sun!

Dermatologist accused me of “Sunbathing & using tanning beds.” Extremely judgemental & made false assumptions…..& that’s only part of the dire consultation

Take care & catch up again at some point 💝

Spotty-ewe profile image
Spotty-ewe in reply toTurquoise-1

You beat me to it. I was going to tell you I saw my GP today and he has prescribed the Dermavate scalp treatment for me. He told me not to use it more twice per week as I’ve had the steroid injection which he says is equivalent to 25mg of Prednisolone per day. So he doesn’t want me getting TOO much steroid. That’s fine and from what you’ve told me above it sounds easy to use. I feel the cold in winter too and wear a hat that covers my ears. My hair is very fine and thin too - falling out even more than usual at present due to the flare. I’m so sorry to hear you have pre-cancerous keratosis and what a cheek the Dermy has making such wild assumptions! I had that too when I suffered recurring UTI’s and kidney infections with all sorts of insinuations made by a nurse in the hospital in Bermuda (where I spent 3 nights with a severe kidney infection) as to how I got the infection. 😳 Dirty minded woman. So what will the treatment be for you? I hope it is sorted soon.

Well I’m busy packing an overnight bag for a belated treat for hubby who had a birthday yesterday. Our region has an annual event called the Spring Fling where artists and crafters open their studios for the public to see. It is very interesting and you see places in our region we wouldn’t normally see. So we are heading over the Mull of Galloway and staying a night there and meandering our way back next day visiting studios on the way.

Have a lovely weekend Turquoise. 🤗😘xx

Turquoise-1 profile image
Turquoise-1 in reply toSpotty-ewe

3 meds from Derm -

1. Antihistamine which has been ineffective so I’ve ditched that!

2. Antibiotic cream for hands/arms rashes = ok ‘ish’

3. Soolantra cream for the redness across cheeks/nose which they said is Rosacea & not Malar Lupus rash as diagnosed by Rheumatologist!! Lol, lol, lol ….. Also Derm said the redness on face was “flushes” because I’m over 45….Put him straight on that one as doesn’t apply to me seeing as I had a Total Abdominal Hysterectomy due to gynae Sarcoma when I was 41! …. 17 years ago… Flipping idiot, I written a lengthy letter of complaint about him due to other happenings at the consultation & further issues ….Got no trust in Dermatology at all.

Seeing Rheumatology again soon to start ?Mycophenolate - Biologics were discussed too…..

It troubles me that some medical professionals make incorrect assumptions, try to fit us all into the same boxes & don’t ask appropriate questions regarding our lifestyles …..BIG sigh ….

Have a great time both of you, try to put your cares aside & enjoy just being …. Find some bliss …. xx 😘 xx

Spotty-ewe profile image
Spotty-ewe in reply toTurquoise-1

Is your Dermy very young and inexperienced? Sounds it anyway. Frightening really isn’t it? Like my Rheumy who couldn’t recognise a Lupus rash.🙄

Thanks for your kind wishes for our short break. After we had our Covid jabs this morning at the old hospital we decided to go to the toilet before heading off to Portpatrick. Pete came out of the gents holding tissue paper to his head and blood dripping from it. He’d bashed his head on the sharp corner of the wall where the sink was recessed. A nurse came to clean and dress it for him but it kept bleeding for ages. Luckily we have plasters with us but I think it could have done with glue in it .

We then went to the Mull of Galloway where the cafe beside the lighthouse has lovely views and we always enjoy a scone and coffee there. It was CLOSED! Would you believe it ? But the wee suite I had booked in the Torr Warren Country House Hotel is lovely. However tonight our neighbours turned up with a toddler and a baby and the noise is getting awful.🙄 Wish I’d brought some ear plugs with me. 🤣 Never mind hopefully tomorrow will be a better day.🤞

Enjoy your weekend. Xx

Turquoise-1 profile image
Turquoise-1 in reply toSpotty-ewe

Oh flipping heck, what a memorable trip you’re having, your poor hubby & your ears! 🙉

Sounds a beautiful place though if that’s any consolation & it’s a change of scene for you both.

I’ve seen 2 different Dermatologists who both dispute I have Lupus & a Nurse Practitioner who did the biopsies. The Dermatologists weren’t young, newly qualified Drs, just full of their own self importance. 1st one was female, Indian lady, 2nd one was male, ?Egyptian, liked the sound of his own voice, didn’t give me much opportunity to speak & cut me short when I did. His English was atrocious - changed his tune when I showed him Consultant Rheumatologist’s diagnosis letter of my Lupus toward the end of the consultation. Ha, his face was a picture! He was lost for words then!

There’s more to this story but I’ll save it for another time …..

Go enjoy yourselves as best you can, take in those views lovely & I hope you’re both ok xx

Spotty-ewe profile image
Spotty-ewe in reply toTurquoise-1

Hubby’s head is healing nicely thanks Turquoise and luckily the neighbours all went quiet around 10 pm with only one crying session around 2am, so not too bad after all. Home again on Saturday night but I’ve been suffering exhaustion ever since and being sun trapped in the car has made me feel bad again. ☹️ I even sat in the back of the car feeling like I was being chauffeured everywhere (poor hubby!🤣) just because there was less sun there and the window sun screens fit best on the back windows. But I still felt hot and uncomfortable even with the air-con on, so I’m staying indoors all day today.

You sound very unlucky with those 2 dermy’s you had.! Shocking! The best one I ever saw was in Vancouver Island, a young man Dr Kruger who was very sympathetic as well as very professional and thorough. It was when I first had a Lupus rash which spread rapidly from head to toe and became unbearably itchy. He suspected SLE but didn’t have the time to do all the necessary tests as we were returning home too soon for all the results to come back. But the Dermy here (pulled back out of retirement due to a lack of Dermys in this region) followed it up and confirmed Dr Kruger’s suspicions.

Hoping things are going ok for you. Take care. Xxx

Turquoise-1 profile image
Turquoise-1 in reply toSpotty-ewe

Spotty-ewe

Who said holidays are supposed to be refreshing & restorative? 😂…

They take a lot of effort & energy so no wonder you’re exhausted.

Don’t think I’ll be getting to Vancouver Island anytime soon! - you’ve been to some fab places 🌎

Take it easy, no harm in resting awhile, I’m fine thanks 😘

Lo-co profile image
Lo-co

I was on Azathioprine for about 6 months and honestly felt brilliant but it dropped my white blood cells. So I had a break on no immunosuppressants (had zero energy & symptoms crept back) then change to Mycophenalate- been on it about a month, and starting to feel my energy pick up and having virtually no Lupus symptoms :)

Turquoise-1 profile image
Turquoise-1 in reply toLo-co

Hi Lo-co

Your success with Mycophenalte fills me with hope for a much needed improvement in my symptoms 🙂

Spotty-ewe profile image
Spotty-ewe in reply toLo-co

That sounds good to me Lo-co.👍🏻 So far it seems most people are tolerant of Mycophenolate more than Azathioprine so I think I’ve made up my mind which I’ll try. Thanks so much for sharing your experience and especially as it is SO reassuring. I hope you continue to do well on Myco and gain even more energy. 🙏🏻 Thanks again. Take care. Xx

Christineosh profile image
Christineosh

I am no expert but think it maybe psoriasis and PUVA light treatment works wonders. However if you have been proved to have Lupus it is not a good idea. I have spent so long going to the Lupus centre at London Bridge , I was with wonderful Professor Hugh’s, now retired who always said Lupus SLE is very difficult to diagnose. It mimics to many other auto immune problems. RA is easy from the way it attacks the joints and in th end as it did with my sister to be permanently in a wheel chair.

Both she and I hardly ever had high ESR for me it was ANA so it shows how different we all are.

I take nothing except 5 mg steroid and at 79 feel I am doing well, sorry but there are far too many side effects from the drugs we are prescribed

Spotty-ewe profile image
Spotty-ewe in reply toChristineosh

Hi Christineosh,

Thanks for your reply. Yes I was diagnosed with SLE in 2012 although it is now thought I’ve had it since infancy following having double pneumonia and measles together from which I almost died. My bloods and symptoms confirmed the diagnosis. How privileged you were to be with Prof Graham Hughes - what an amazing man. I read his book after diagnosis and related to all he said about SLE, and also listened to one of his lectures on-line. I wish there were more like him in the world.

My Lupus has attacked me full on this year starting in January with my liver and pancreas so my Rheumy feels it is better to suffer the side effects of the drugs that will suppress it than allow it to damage my internal organs. I already have an atrophying kidney from all the years of then inexplicable recurring infections before diagnosis, and occasionally my heart and liver are involved . I’ve now just started my third course this year of Prednisolone (30mg tapering down by 5mg each week) which play havoc with my digestive tract so have to take Esomeprozole too. I had a few years of remission but it is making up for it this year! 🥴

I am 11 years younger than you but hope someday I’ll be allowed to just take 5mg steroid without the wolf rearing its ugly head again.😉 Thanks for sharing and I wish you all the best. Take care.

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