Hi I am new, I need some advice please :-)

Hi all,

I have just been diagnosed with SLE/ Arthralgia / Serositis / Sicca symptoms and cervical lymphadenopathy. I am trying to come to terms with this new (to me) and scary illness. I became very ill 18 months ago and was diagnosed with ME. I felt like my life was over, I had to leave work and stop studying for my BA. As a single parent it was difficult and felt impossible at times. I had a blood test for my ANA and tested positive, I was sent to see a fantastic rheumatologist at the Freeman hospital in Newcastle called Dr Arthur Pratt. He sent me for all sorts of tests and I was told the diagnosis 6 weeks ago. He has put me on Prednisolone and Hydroxychloroquine.

I have a few questions which I was wondering if anyone could kindly answer or even have an opinion on please?

How long does it typically take for the steroids to work? It's been 6 weeks now and every day I feel worse. I know that it takes 3-6 months before hydroxychloroquine works but I expected to see some improvement from steroids by now.

Also what are people's thoughts on my ME being SLE all along, does anyone have both?

Do people get worse in Summer? I was bed bound for most of spring summer last year and felt an improvement in aug till nov then got I'll again.

I've been reading your posts and many people talk about flares can anyone tell me about these and how often they have them?

I know everyone is different and I can't compare my illness to someone else's but I was just wanting to hear other people's experiences.

I am sorry I have so many questions and don't wont to bombard you with them but I would really appreciate any help or advice anyone has. This is such an isolating illness and feel so alone at the minute. I can't seem to find any support groups in my area (Durham).

Many thanks for reading my moans

Vicci :-)

20 Replies

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  • Hi vicci, it is hard to get your head around it all, but I'm sure once your lupus has stabilised, you will have a life. I would call rhuemys secretary to let your dr know how you are. I would have thought 6 weeks of pred should have helped, so they may alter the dose. There are other meds that are stronger immunosuppressants, and you may need those too. In my opinion, your ME was lupus all the time. Very common misdiagnosis. The sunshine/ daylight/ and certain light bulbs, can affect your lupus, but not everyone has this problem. Likewise, not every lupy has rashes. Flaring, is an accellaration,( spelling !!!), of your symptoms. There are things that we learn not to do. Everyone is individual, so in your case I would put high factor sun cream on, a hat, and avoid the hottest part of the day. This is what I have to do, as for me it will cause me to flare. Pacing yourself is another important thing. Try to avoid infection, as best as you can. To conclude, I would say that because you have lupus, it doesn't mean you will be ill every day. Also if well controlled, you may have very few flares. Nobody can predict how well or bad you will be. The one piece of advice you should take is, no matter how lovely your DRS/Rheumy are, you must keep on at them if you are still suffering. You will read often on this site about our battles to be seen by our DRs. Rheumatology depts are so busy, they take your silence as being well !!! Ask as many Q's as you want. That's what we are here for, as well as supporting each other.

  • Hi 6161,

    Thank you for your reply. That makes sense and my partner told me to ring hospital but I wasn't sure if It took time to see a benefit from steroids. I don't have a rash yet but I might still develop one I seem to get new symptoms every day. Thanks for the advice about rheumy I have a tendency to go with the flow and not rock the boat. I need to learn to speak up :-)

    If I can ask another question? hydroxycloroqine seems to be the most common med but is it the most effective (or is it just more cost effective)?

    Thank you again for the reply and advice :-)

  • Hi Vicci......I see Dr Griffiths at The Freeman Newcastle.....but also have a rheumy nurse Karen Walker who I can ring and see when necessary. Karen is very approachable. If you ring the rheumatologists dept at the Freeman then they will happily answer your query or in my case when needed rang me back. Good luck xx They are great there by the way.

  • Hi Mstr,

    Thanks for your reply. I don't know Dr Griffiths but your right there great at Freeman. I have been trying to pluck the courage up to call and I did today but no one answered so I'll try again tomorrow. I haven't been told about a nurse but I bet they are easy to approach. Thanks again for your reply and it's reassuring to hear that you are having a good experience at that hospital xx

  • You're welcome....hope you get lucky tomorrow x

  • It does seem par for the course, that we all get put on hydroxy. Even if other drugs are introduced because it's not working, they will still keep you on it as well as other meds. Hydroxy is made from quinine which is an anti malarial drug. By accident it was realised that lupus patients benefit from it. I don't know about costs. It is a relatively safe drug, although a small minority have problems. You must have your eyes tested every year, and should get them done now, to compare results a year after the drug was started. It can affect your eyesight. Again, small numbers have this problem. Your rheumy may suggest a depo medrone injection to tide you over til the hydroxy takes effect. This is a big dose of steroid that goes to all of your body, as well as prednisolone. You may have no probs with your Drs, and I know there are some good ones out there, !!!!! But as I said before, sometimes you have to take charge of your own health. It's no good having a 10 min appt, given a prescription and told to come back in 6 months, hoping for the best. The disease can do untold damage if left to flare. As you are so early on in diagnosis, every precaution should be taken until they are confident with the extent of your lupus. Hope this helps.

  • Yes it sounds like I may need the injection as well as the tablets. The doctor started me on 15mg for 4 weeks and decreased it to 10 mg for two and I am due to go to 5mg on Saturday. Is that quite typical? It's such a relief to be able to take meds as they gave me nothing for the ME??? I just need them to start working now. Have you been diagnosed for long? This is a great forum, I am pleased I found it.

  • Looks like your steroid dose isn't working, your rheumatologist will need to up it if you have had at least a slight improvement. If you've felt NO improvement to steroids, it might be that your immune system is refractor to steroids (i.e. for some unknown reason your body doesn't respond to it, which some people can experience, although it is rare, I think), or your illness is not of an inflammatory nature, which doesn't tally with the SLE diagnosis.

    I suspect that your rheumatologist might put you on an increased dose of steroids or he might just say to wait for hydroxy to kick in. It took me about 3 months before I started to feel a bit better, about 6 months to feel able to stop the painkillers and 1 year before my breathlessness improved.

    It is a waiting game but you'll get there, you need an understanding rheumatologist and patience.

  • It is normal to take steroids in this way. We call it tapering. You can be started on higher doses of pred to taper down. As purpletop has said, you may be one of those people, who don't suit them. Yes this is a great forum and I have learnt and helped many members. I have been diagnosed since 2005, but ill since 1998. Make that call. Nag nag nag !!!!!

  • Hi Purpletop, thank you for your reply. Lupus is such a complicated condition and I am learning that slowly. This might seem crazy but I hope that I haven't been misdiagnosed again though, I keep coming to terms with one thing and they change there minds.....the doc seems sure though so maybe it just the dose isn't right. Thank you again

  • It sounds like a roller coaster ride for you 6161, you have clearly helped many people with your experience and support. I will defiantly call them tomorrow though and I will let you know what they say :-)

  • Hi Vicci,

    Welcome to the site. I'm glad to see that the community has already been answering most of your questions. If you think it would be helpful I can send you one of our free information packs about lupus. Just send me a private message or email paul@lupusuk.org.uk with your name and address. If you need anything, just let me know.

    Best wishes,

    Paul

    LUPUS UK

  • Thank you Paul. I have private mesaged you.

  • Hi Vicci. I was diagnosed initially with CFS/ME and sent to see a specialist at the RVI. He was brilliant. I originally had ANA 320 and a very borderline DNA. He saw me a few times took CK due to my difficulty with stairs etc and a feeling as if I'd run up 5 flights rather than dragged myself up one, lol. The Ck was slightly raised at that point. Anyway He refered me to the Freeman and i am now seeing Dr Griffiths and I got to see Karen last week. She was brilliant. I wished I had rung her up earlier. She put it in a way that I could understand the way things are decided, the need for treatment etc. Definately try again to contact someone. It is possible that Chronic fatigue was probably the first sign and things have progressed. As far as the ME diagnosis is concerned I don't think you fit the criteria any more.

    Take care x

  • Hi Whathappened,

    Thanks for the reply. Sounds like you have had a similar experience to me. It's all very confusing isn't it but what you said makes a lot of sense, it was probably SLE all along. I will ask about Karen when I next see Dr Pratt. Do you know any support groups in our area? there seems to be quite a lot of us in the NorthEast area. Thank again for your advice x

  • Hi I'm not in any but I looked on Lupus uk and it directs you to a local North East group. X

  • I wil have a look, thanks x

  • Hi all just to let you know that after calling consultants secretary I got into see consultant early. I felt like it was a waste of time. I had a steroid injection and he told me he doesn't have a magic wond to take my symptoms away. He said maybe I have a post viral fatigue as well as lupus symptoms. But he's not concerned. I told him about my severe memory lost and he laughed. He is such a lovely man and I'm sure he didn't mean anything bad but I felt bad for wasting his time.......even though I know deep down I didn't. I mentioned the tremors in my hands and he said its nothing to do with lupus. I feel back to square one again. Also I still haven't felt any improvement from the hydroxy yet and it's been 3 months now. I have been having awful pains in my upper stomach also it lasts for about an hour. It's so bad I am bent over in agony crying. I nearly rang went to a&e as it was so bad. It isn't gall stones as I had my gall bladder out 7 years ago. I might post about upper stomach pain in questions page, I case this isn't seen. Thanks for advice xx

  • Hi Vicci

    I'am sorry to here you are so poorly, you sound just like my daughter I think the ME will b the SLE. SLE symptoms are so debilitating my daughter feels so weak and tired and she sometimes can't get up the stairs.

    What dose of prednisolone are you on perhaps you need a higher dose my daughter started to feel better in 2 weeks and like you was started at the same time on hydroxychloroquine! Flare ups can last weeks, days or even years hopefully yr flare up will subside soon since my daughter went on the steroids she's been ok that was January but do come off them very slowly you sound like you have a good consultant go back to him and see if the dies needs increasing! Also my daughter did slit of research into diet and there are a lot of SLE sufferers that do this green juicing and organic food and Vit D supplements she has been doing that since January too! Read about it if you want to know more message me!!

  • Hi Larrylad123,

    Thank you for your reply. I am sorry to hear that your daughter has had a hard time but it's great to hear that she is feeling a lot better now. After seeing the consultant yesterday he has told me to stop the steroids in two weeks. I've been reducing them for 4 months now. I can understand why he wants me off them 15mg never did much good. I am feeling worse every day but he said there isn't much can be done to help me with pain and fatigue there isn't any other meds other than what I'm on. It feels so frustrating. Thanks for the advice on diet I will have a read up on it.

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