Disappointed by Rheumy appointment yesterday. Honest opinions needed please. Sorry in advance that this is so long.

[Wendy39]

I saw my Rheumatologist yesterday and have been left frustrated yet again. It was a 9 month check.

The nurse weighed me and did my blood pressure before the Rheumy called me in.

She asked me how I had been and I said not good really. I had a flare up September / October 2015 and January / February 2016. I told her I had a few new symptoms, stabbing pains in my head – headache 11 days long, but sharp stabbing pains in my head. I had an earache too. Same side as pain behind my eye. GP said headache with some sort of neuralgia and has given me a new migraine medication to try. We discussed the new symptom of back spasms. I pointed out that general back pain had increased as well. Muscle spasms had been diagnosed by GP and Physio, who had seen me when I was experiencing this during the September/October flare. The spasms happened again in Jan / Feb 2016. Back spasms only when in a flare. Separate issue to lower back pain. I told her I get pain in my ankles, like I get in my wrists – she diagnosed a mild form of bilateral De Quervain’s Tenosynovitis before, that lasted 6 months. Now get that feeling in my ankles as well. I get pains in my hands and shooting pains from my elbows down. I can itch anywhere and want to scratch my skin off. I explained I had been diagnosed with venous eczema. I take 2 anti-histamine a day to curb allergies and itching my legs. I get itchy finger tips and itchy hands – she said that is eczema. She said none of this is my lupus. She asked me if I got my allergies under control. I told her that she ordered my tests last year, I am allergic to house dust and grass and dogs (not cats). I don’t have carpets in my house and I’m lucky that I don’t do my own cleaning – I have a cleaner – so dust isn’t an issue. I told her I had a skin lesion on my forehead when I was diagnosed and I gained another in Sep / October 2015 flare-up and then another in Jan / February 2016 flare-up. The latest one was sore and hair loss in that area. I told her I was seeing a new Dermatologist and that he had taken a skin biopsy on the rash on the back of my neck at the end of January. The GP had given me a copy of the results but they mean nothing to me. She said she had them but they don’t mean anything to her. She had them on the screen. I asked her what basal cell damage was and she didn’t know. She said the likely cause of the rash was eczema. I said it doesn’t say eczema anywhere, but it does say lupus. She said the results are inconclusive and so up to Dermy’s interpretation. I said he said when results are in, he would see me – next Tuesday 19th April and we would discuss medication and the other options that are open to me. She said they are no other options and he would mean creams or lotions. Arghhhhhh! I was getting upset and angry now. She examined me. I told her that if I use the guillotine at work I walk away like an old woman bent over and it can take me a while to straighten up. It also hurts if I am in one position standing for long – washing up, or cooking or ironing – back gets too much and I have to call it a day. She asked what I did when my back hurt. I said I go and rest. She said that is the problem, we are designed to walk on the Serengeti, not sit down. I said I am a mum of 3, I work part time and I am active. I am not sat down much. My job isn’t sitting down all the time either. I am a TA in a junior school and I am up and down all of the time. I think I am quite active for someone with lupus. I walk. I have done physio course and 5 knee classes. I am currently doing hydrotherapy. I go to Pilates. I have started to go back to the gym once a week (November 2015, at physio’s recommendation). So I am not sat on my bum all day. I asked her if back issues were related to my hips and knees. She said hips. (They will not admit there is anything wrong with my knees!). I have done all that was recommended to me by the Podiatrist as well – i.e. sensible shoes, lace ups or securely attached to the feet with an inch heel.

She said it is all related mechanically. She asked me about any issues with my bowels and I said well I get bouts of diarrhoea but that has been going on since before my diagnosis.

She told me to self-refer to physio for my back. She told me to go to the Physio Department before I left and fill in the form. She does not think Pilates is enough. I need to strengthen my core. (If I hear anyone else tell me I need to strengthen my core……..I have done physio now and a knee class and hydrotherapy at the moment, plus Pilates and Gym when I feel like it. I DON’T HAVE THE ENERGY FOR ANYTHING ELSE.)

She is going to refer me for an MRI of my back.

She did not do a urine test and no bloods ordered!

She did not give me advice on how to deal with my flare-ups.

Just carry on with my 2 x 200mg on hydroxy a day. 

However she did not discharge me, which she said in the letter following my last appointment, she was going to. I guess that is a result.

I was upset and angry. I discussed it with my husband, later on and we agreed that I need to keep a daily diary to show them what I feel like every day. I don’t have a symptom free day, ever. Whether it’s lupus, fatigue / headaches, or osteoarthritis or something else. I am 41 years old and feel like my health is not getting any better and my mobility is deteriorating.

Last August I walked up Snowdon with my family. It took us 8 hours. Me slightly longer, as the last 2 miles or so, my knees were agony and I cried with every step. But I did it.

Friday 8th April 2016 and we walk up Pen y Fan. It takes us 3 hours. Again I hold everyone up. My knees were so painful, every step coming down hurts.

I realise that I couldn’t do Snowdon again now. No way, my hips and knees wouldn’t take it.

I now have the biggest cold sores on my nose I have had for a long time and I’ve had shin splits and heat in my knees ever since. Today I have a migraine coming.

Is this normal for a 41 year old? I am just a hypochondriac after all? Or is this as good as it gets. Am I expecting too much. Please be honest with me Lupus friends.

My husband and I joke that I am ticking things off my bucket list already!

I will see what the Dermatologist comes up with next week, but my hopes are fading fast. I was hoping he would be my knight in shining armour and get me sorted. But that is looking unlikely now. My husband has suggested getting a second Rheumatologist opinion from a lupus specialist. Maybe I should await the MRI and outcome before we go down this route though.

I am feeling down about it all.

Diagnosed with SCLE, osteoarthritis in both hips and I think knees, various allergies, varicose veins, a history of eczema and headaches/migraine.

[PMRpro]

If my rheumy treated me like that I would get up and leave the room. I don't have lupus - but neither does that doctor and she blatantly has no idea what it is like living with a chronic autoimmune illness. I'm with your husband - shame she didn't discharge you in some ways.

[Hidden in reply to PMRpro]

I'm still waiting for a book published by PMRPro!!

[PMRpro in reply to Hidden]

Not just by me - but there is: PMR&GCAuk North East Support have a booklet for members (and others who want to purchase it) called Living with PMR&GCA

It's been mentioned a few times on the forum.

[Hidden in reply to PMRpro]

I have bought the book some time ago.  It's still somewhere in my house.  Thank you x

[Elle-26]

Rheumatologists dont deal with Osteoarthritis or Osteoporosis. They usually deal with RA & Systemic Lupus .. I was given websites to research since my diagnosis of Lupus .. I see a Dermatologist every month and if needed I see other consultants for other forms of inflammation ... Ive see a neurologist, Gastrololgist, Rheumatologist but rarely see them on a regular bases. Your MRI should show any problems with Osteoarthritis. But I will warn you not to over do things as I have problems walking due to pushing myself. If you feel pain stop and rest up. Im in my 40's too .. I have degenerative disc disease which trap my nerves causing severe pain and Sciatica. I do hope you do not have arthritis As with the Migraines you get, it could be due to Fibro? Do you have sore painful muscles and spasms? I do hope you have some answers soon ... gentle hugs -x-  

[Wendy39 in reply to Elle-26]

Thank you for taking the time to reply. When I spoke to my GP about my osteoarthritis and joint issues, she told me to take paracetamol when needed and discuss it with my Rheumy. So I guess I am annoyed that neither of them want to deal with it. But my flares are lupus. But rheumy doesn't seem interested in helping me with them and they last for weeks at a time. I only see a rheumy and dermatologist - only recently has biopsy, despite being diagnosed 2.5 years ago. My health trust only just employed a Dermy - didn't have any at all for a long time. And yes I do get spasms/twitches - recent thing in legs, lower abdomen & upper back. Thanks again. 

[Hidden in reply to Wendy39]

If I am blantantly honest, after looking at posts on Lupus forum since some time, Rheumatology depts do suck massively (except some exceptional ones).  RA services aren't great either (if they are so good why so many people are getting every single joints replaced, may I ask?) but Lupus services seem to be even more patchy with ignorant and lazy Rheumatologists who think they can keep getting paid for their poor service to fund their nice NHS pensions and upper-middle class lifestyle (to send their children to private schools) without bothering to care their patients.  I recently told one "professor" over the phone that his practice was poor and he is a "liar" because that was what he was to me.  I have seen some reports that doctors receive a lot of money from pharmaceutical companies as in the US (posted at another HU forum).  We need far more transparency as to what is actually going on. They suck like politicians (liars)!  Good drs are either taken ill by trying to help so many patients who were rejected elsewhere or moved somewhere far more holistic to practice without unnecessary, annoying hassles from the NHS accountants and managers, constantly telling them what to do with their patients (e.g. get rid of them all).   Rheumatologists ought to be far better regulated as so many casually ignore what Guidelines suggest mainly driven by cost-cutting measures.  

[Wendy39 in reply to Hidden]

Makes me think of the 2nd NHS Dermatlogist (also 2nd appointment) I saw in September in September last year, he was a Professor, whose advice to me with SCLE was that I needed to moisturiser. End of. Never asked me about my sun sensitivity - which is a major factor with SCLE. Another successful appointment. I fear you may be right. 

[Wendy39 in reply to Elle-26]

I have just realised, reading your reply again, that you see a Dermatologist every month? Wow! I am in shock. I have Subacute Cutaneous Lupus SCLE and I am sun sensitive and have lots of skin issues. The first NHS Dermy I saw, it was her last day and so that was pointless. I have since seen two different Dermys. So that is 3 appointments in 2 and 1/2 years and I am no further forward. Is your Dermy NHS or private?

[Elle-26 in reply to Wendy39]

NHS .. I have both DLE & SCLE and also very Photosensitive & Anaemic.. The Rheuma called me complex as I have signs of SLE but I am ANA negative. Im on Methetrexate which needs to be monitored thats why I see either the Lupus nurse or Consultant .. I lost all my hair, it sort of grew back then I lost it all again, along with my eyebrows and eyelashes .. I get Lesions everywhere .. inc nose, mouth, ears and private areas, which causes problems of their own. Maybe thats why I see them so often ... I have inflammation like SLE and have internal inflammation ie stomach and esophagus and irregular heartbeat (rare in SLE and not known in other forms of Lupus) I also have the Malar rash ...  my Rheuma doesnt know enough about Lupus (only deals with the RA side) and gave me a choice of going to St Thomas's in London ... I declined as I could never make the journey .. Fatigue seems to rule my life ... Have you been treated by the Derma or GP? I do have a good relationship with my Derma as it was her that sent me to the Rheuma when I told her the pain I was in ... it was then I was diagnosed with other things ... but the Rheuma is not an expert on Lupus and he told me so .. thats why he wanted to send me to London .. I would go see your GP again if your skin is still an issue and the treatments are not working .. I had a fight for 2 years .. as one Derma told me I just had alopecia and dismissed me lol and one GP told me its just eczema It was only when I collaped at work I was sent to see a Consultant that took a biopsy of one of the Lesions on me, and found that it was Lupus .. the rest followed ... I really suggest you keep on at the GP if you feel something isnt right ... I shamed the GP who I presumme thought I was neurotic .. I wish you well xxx

[Wendy39 in reply to Elle-26]

Hello. I agree that those of us with SCLE should have a Rheumatologist monitoring us anyway, as SCLE is a distinct sub set of DLE and SLE. 20% of those with SCLE will end up with SLE diagnosis. From memory when I was diagnosed with SCLE in 2013 I had a positive ANA and ENR / Anti-RO. Is that right? I can't remember the right names. Sorry. But I remember the Anti-RO is often linked with SCLE and is indicative of sun sensitivity. I have suffered numerous skin issues - sores in my ears, on my scalp, on my nose, etc etc and hair loss and hair thinning - but luckily only small patches of hair loss. Who prescribed you the methotraxate? Your rheumy or dermy? 

[Elle-26 in reply to Wendy39]

Hi The Dermatologist as I was getting more inflammation and deep scaring .. I dont blame the rheuma for telling me the truth ... little is often know about Lupus and he only had a basic knowedge of the disease like the symptoms of RA. Yes the anti-Ro/SSA, and anti-La/SSB blood tests, these came back inconclusive .. I had the Sjögren's syndrome test and that came back positive .. Even SLE sufferers are given steroids and Hydrocloxacloriquine. Ive been on steroids and never wanted to take them again .. it helped stop the inflammation on my eye muscle ... at first glance they thought it was myasthenia gravis .. my eye lid had dropped, the GP wouldnt treat it and told me to contact my Consultant :/ I was the Derma who treated me .. I am thankful it wasnt MG ... but now know that my Lupus can cause manifestations of SLE .. Ive been diagnosed for about 3 years nearly .. Methotretate is a hard drug to cope with for some .. Ive only had the sickness and diarrhoea. It will take sometime before I feel any benefits ... so I cant say if it works or not at the moment .. I wish you all the best .. keep your GP and Consultant upto date with how you are and whether the medication is working .. Ive always taken photos when Ive flared badly and shown them to my Consultant as then they know you arent making it up xxx

[vernon123 in reply to Elle-26]

Hi im reading ur posts n ur symptoms seem so simalor to mine.i have Ra n lupus along with connectivetissue dissorder.on methotrexate for yrs n now my left eye lid has dropped.they have chalked it up to hasmotos disease but i think its mg as well.I truly feel half of these dr.s in ont have no clue wat they are doing and its just a guessing game.Im so confused and frustrated just wish these dr.s could fix my issues n help me.

[Littleandperfect in reply to Elle-26]

Hi Elle... I’m new to this chat page but having been on 30 mls steroids for 2 months with skin symptoms getting fierce every time I tried to wean my Dermatologist says methotrexate is the next step 😟how do you feel about taking it?

[maggielee]

Hi sorry to hear that you are feeling disappointed in your doctors, I wondered if it was our NHS  letting us down, assuming you live in my area and they are not coping with lupis diagnosis? I popped into my local GP out of frustration with my visit to a dermatologist  (saw in Oct) and she thought I should have my bloods checked again due to the medication I am on. Some how this does not seem right, just ad hoc suggestion instead of a plan and she did not think I should go back to Rheumatology which I thought would understand other auto immune problems cropping up.

I am impressed that you are doing as much as you do, I just go slow and steady (as I work full-time I need to keep going vs your active family) and seems to be ok at the moment and also I sometime opt out of going out because of the sun (and lots to do at home over the weekend).  I am becoming sun sensitive around my nose even with 50 factor, the rest of me is covered in layers and I work in a UV protected environment which I am very fortunate that this is the case. 

I wanted to send you a hug and to wish you well.  Let me know if you want to join me sometime to tackle the NHS here in regards to their lupis care or lack of.

Maggielee (fellow SCLE)

[Wendy39 in reply to maggielee]

Hello maggielee. Yes, I noticed we live in the same area. Probably have seen the same rheumy and dermy at times. SCLE should be monitored by a rheumy I think, as it is possible to have systemic involvement. I too am sun sensitive and have to wear clothing that I can't see the sun through for protection. I wear long sleeves and trousers most of the time. Sun glassses. Factor 50 on my face all year around. And then a hat if I am out for any length of time. I also have factor 50 rash vests for the summer. I sit in the shade if I am outside and we have a sun canopy Factor 50 now at home so that I can sit outside in the summer and watch the children play or snooze and get some fresh air without burning my skin. It's warm today and everyone else is so happy about it and I just think to myself, here we go.......Thank you for your response. Stay in touch.   

[smudge1980]

Hi Wendy39, I can hear the frustration & anger in your post & I'm not surprised. I'm with your husband & wld get a 2nd opinion. I've often had that thought myself as I too don't seem to be getting anywhere with my lupus & dermi team. It feels a total waste of time & energy going to these appointments. 

I also think you do extremely well with all activity's you do, maybe you should rest more when your in pain, your body's telling you it's had enough when it's giving you pain. Please get abit more fight & get second opinion. x 

[Wendy39 in reply to smudge1980]

Thank you for your reply. I guess I am frustrated by it all and a little resentful that I cannot do what I want to do. I have three children, aged 8, 10 & 12 and a loving caring husband. I feel that I am holding them bakc and letting them down. Term time is hectic for me with all their after school stuff etc and I do tend to nap every day, Monday-Friday, when I get in, 4-6pm before getting up and preparing an evening meal. I only work 2 and 1/2 days in a school, as the hours suit with no child care and I couldn't do a normal job with only 6 weeks annual leave now, I would never survive. I need the school holidays to rest and relax. I used to be a personal injury lawyer. I could never manage that job now. Thank you again for your reply. 

[lupusinflight]

Wendy, I'm so sorry to hear you are running the gauntlet of one of the worst aspects of having lupus (and all the attendant, connective tissue damage/pain) - which is that most doctors fail when it comes to managing this disease, but fail spectacularly when managing the patient suffering from this disease. Lupus is too complex for most general practitioners. I hope that along the way you discover that one doctor who begins to shed light and hope. Don't give up on the knight! S/he will come. Good luck. And please don't believe that utter nonsense about humans being designed to 'walk in the Serengeti' - where do doctors come up with this stuff???!! Rest, rest, rest. You've earned it and the lupus wolf-beast demands it xxx 

[Wendy39 in reply to lupusinflight]

Thank you so much. I am getting tearful reading everyone's supportive replies. It means so much. You begin to doubt yourself. I am not the strongest person but I am not weakest either - I gave birth to 3 children with just gas and air, so always considered myself a mind over matter person. But this battle really does take the fight out of you. I'm off to take some paracetamol. Big, big thank you all. 

[rlupus]

Hello  Wendy, I am sorry to hear what your going through your not alone this is now happening to me i am suppose to have follow up appointments and have not been seen since october by consultants i feel very alone, but i have just decided i have to deal with it in my own way, the only support i get is from my GP.

Its a awful illness to live with it.

try to keep well x

[Wendy39 in reply to rlupus]

Thank you for replying. Yes, you are right, there is a terrible feeling of being alone and not knowing what is around the corner. I don't know where I would be without this site. It's meant so much to me. Even when I don't post myself, I take time nearly every day to check in and read everyone else's posts and replies. I take comfort in knowing that there are others out there who understand. Which consultants do you see? 

[rlupus]

I see Dr Malaviya and Dr Lawson at Broomfield Hospital Chelmsford, along with many others as i am very complexed .  I just think with all the cut backs and there work loads they just cant keep up with everyone i was seen every 8 weeks at one time but now its just getting longer and longer i was last seen october 2015 and was told i needed to be sen 8 weeks after but every time i call i get told no appointments fully booked and they can not over book i given up.

[Paul_Howard Partner LUPUS UK]

Hi Wendy39,

If you are really unhappy with the service you are receiving from your rheumatologist it may be worth taking your husband's advice and asking your GP to be referred to a lupus specialist for a second opinion. If you let me know what area you live in I can provide you with information about any specialists who may be closest to you. 

[Wendy39 in reply to Paul_Howard]

Paul, I have messaged you now and I hope you have received it. Wendy

[Hidden]

Wendy, I'm curious as to which hospital this was.  It's not "G" hospital in London is it?  I have the same impression as rlpus.  "Things got worse" generally.

[Wendy39 in reply to Hidden]

No. I live in South West Wales. I see a Rheumatologist at Withybush General Hospital and a Dermatologist now at Glangwili Hospital in Carmarthen. 

[EOLHPC]

Have only just discovered your thread, Wendy....as much as I feel dreadful dismay at the way your consultants are dealing with your case, I also feel greatly moved by these wonderful deeply thoughful replies from our forum friends, and by your responses.  I'm so glad you're here...and very much hope you'll let us know how things go...you're clearly a v brave, resourceful & conscientious woman: hang in there, Wendy: don't let the baddies make you forget the real you...I know well how demoralising these dreadful phases can be...in my case, it took several phases like this in a row before I was driven in extremis to dig ultra deep enough to finally achieve the breakthrough referral that has helped me to feel better at 60 than I have since my 20s.  

🍀🍀🍀🍀 coco

[Wendy39 in reply to EOLHPC]

Coco, thank you! Thank you for responding and for your extremely kind and generous words. I'm touched. I'm so lucky to have found you all. It's therapy in itself and is no doubt saving the NHS millions in that respect. I think that's why I got emotional earlier reading everyone's replies. It's cathartic writing a post / rant on here! I will wait and see how I get on with this Dermatologist next week and take it from there. Thank you. x

[EOLHPC in reply to Wendy39]

👏👏👏👏👍💃🍀😘

[lotsoissues]

Wow you sound so much like me!  Here's what I'm wondering.,.is there a possibility at all that your eczema could actually be psoriasis?  Your lower back pain, tendinitis issues, knee pain, hip pain....all sound like spondylitis.  Spondylitis is autoimmune and there's various causes of it and one cause is seen in patients with psoriasis.  I was diagnosed wrongly for years with eczema when I really had psoriasis.  Your rheumatologist by asking how your Bowels were (inflammatory Bowel disease is another way we can see possible spondylitis too) and ordering a lower back Mri I believe is wondering the same thing. Sacroilitis can be seen on Mris of the lower back and it is the key defining symptom of spondylitis.  Sacroilitis means inflammation of the sacroiliac joints and those are found to connect the pelvis to the lower back region.  The pain with spondylitis is often found in the lower back, buttocks, hips, knees, and neck.  It makes patients incredibly fatigued.  It also Typically involves enthesitis which means inflammation of the tendons, ligaments, muscles that connect to the joints so the tendinitis you get is a sign.  I think she's doing the right thing by getting you the mri to see what is going on.  So be patient and get the mri and go from there.  Best of luck! 

[Wendy39 in reply to lotsoissues]

Hello lotsoissues. Great name. Thank you for replying to my post. It's really good to hear a "positive" take on it. Maybe you are right. Maybe my everyday symptoms are not lupus or osteoarthritis but something else. I have had x-rays taken of me knees before and told that they showed nothing wrong and no action required. But I am very skeptical of the value of x-ray for my kind of complaints. I have had MRIs on my left hip and they showed my labrum tear/lesions etc that required a hip arthroscopy (April 2013) and showed my osteoarthritis. Believe it or not, I have come back from the supermarket today to find a hospital appointment letter for the MRI for 17th May. I am truly shocked that the referal letter and appt have come through so quickly. Maybe I was too quick to judge my rheumy - maybe there is nothing wrong with her judgement and knowledge - she just lacks communication skills and a good bedside manner. I will keep you posted. Thanks again. 

[Hidden]

Hey I've come late to this post and the many great replies too but I completely relate to your experience. I had a very similar consultation with both my rheumatologist in January and my neurologist a few weeks ago. I'm ten years older than you and I have to say that, in lots of ways,  my health has improved since having my menopause, particularly my skin. When my three children were little I just battled with things that, in retrospect, I should have had some help with from specialists such as dermatologists and immunologists. 

I suffered with my skin for four decades.  I rarely even saw the GP about it, and when I did they just put me on courses of oral steroids. The reason I rarely bothered to go to the GP with my many allergies, widespread eczema, alopecia and frequent lesions around my face and in orifices, was because I felt this was just how life was. My late mum had always blamed anxiety and I just assumed she was right. I had prologonged bouts of dizziness, always had to be very careful in sunlight, episodes of severe lower back pain, tennis elbow, more cricked  necks than was normal for a young woman - and none if it was joined up by any doctor when I bothered to see one. Each set of symptoms was treated in isolation - and I assumed that I was just unlucky. Now I see that they were just fire fighting and I believe they still are! 

It was only when the bilateral joint pain started that I started going to my GP and then was referred and started this long, unsatisfactory journey of being told "it's just this.. or that" much as you are now. Along the way I've acquired diagnoses of RA, hypothyroidism, small fibre neuropathy, osteoarthritis and several attempts at labelling me with chronic anxiety in between. 

But the good news is that, after decades of misery, my skin is pretty great now. It's thin and wrinkly after a lifetime of steroid creams, but almost none my symptoms now are visible to the naked eye. In fact it's only the high inflammatory bloods that stop them telling me to go away and walk the Serengeti and never bother them again! 

The neurologist told me that the reason I don't sweat is probably because I'm not working out hard enough (Zumba!), the reason my feet are going numb is because RA has affected my nerves in the past but I'm lucky it's gone away now. The reason I have disequillibrium is because my feet are "a bit numb" but this is never going to improve now so I should get a grip and take up tai chi and Pilates. I apparently look "too well to have a multisystem autoimmune disease". Flip - next time I see her in October I'll go in Lycra having lost four stone and paint my face pale with dark shadows. Maybe then she'll show me some respect?! 

I did see one very decent professor of rheumatology/ connective tissue diseases a few years ago. He explained all the same things that others have explained - but he explained them with a degree of compassion and empathy that seems to be very rare. Like your rheum he said I have a very allergic disposition that would always make the risks of more powerful drugs a problem for me. At the time I was on Hydroxy, injectable methotrexate and Nifedipine. I later reacted badly to all three. But he explained I have a very broad but irrefutable autoimmune profile. However only the synovial joint swelling of RA would ever qualify me for further treatments. He felt that SCLE often improves post menopausally and this is why he felt I have RA with secondary Raynauds and Sjogrens and allergies instead of SLE. I think now that he might have been right or nor not. But at least if he was, then you may be like me and find that at least your skin problems subside with age and hormonal changes. I do celebrate and marvel at the absence of eczema and alopecia now on a daily basis. 

[Wendy39]

Hello. I have today come home from the supermarket to find an appointment letter for my MRI for 17th May. I am really surprised at the speed of that coming to me. Maybe I have jumped to the wrong conclusion about my rheumy and she just isn't very good at explaining things to her patients. Who knows. Time will tell. So Dermy next week and MRI in May. I wonder where this will take me. Thank you all again. x

[Elle-26]

Hi Wendy39, I forgot to say that my Lupus nurse told me about a Sun Sensitive washing powder for your clothes ... Ive bought two boxes from Amazon and the effects last 6 weeks. So when the weather starts warming up I will use it to help me cope over the Summer .. I also bought some UV film for the windows .. I have put them in my kitchen (two windows and a door) and will use them also on the rest of the windows in my home (when I save the money) There is research being done on Sun Sensitivity as thats how the Nurse found out about the washing powder ...  I thought Id mention this as it may help some xxx

[Wendy39 in reply to Elle-26]

Thanks Elle-26. I've never heard of the washing powder! I will definitely look into it. 

[Wendy39 in reply to Elle-26]

Hello again. I have had a quick look on Amazon for this and cannot find it. Would you be able to give me some more info on the name & manufacturer etc. Thank you! Wendy 

[Elle-26 in reply to Wendy39]

Hi Wendy, its called Sun Guard by Phoenix Brands (made in America) the website is sunguardsunprotection.com however, I bought it through Amazon UK   

[maggielee]

Hi Wendy

You are in my neighbourhood! I thought I was a lone wolf (female of course) in our NHS.  

I should say the Rheumy past me to dermatology and I waited about 8 months to see him (not the one in Carmarthen) and the one I ended up getting was 'interested in Dermatology', he kindly nodded his head and use phases like -we will cross that bridge when we come to it and it is your age, not very helpful.  I did ask if I could go to a Lupus specialist and he said no, out right refusal and (when I was first diagnosed I ask Rheumatology if I could be seen by a Lupus specialist and they said I would basically have to be having organ failure.   Let me know how you fair and if you have any more success.  I have contacted Dermatology as I have not heard from them in 7 months and I am concern about my face burning even with 50 factor and I drove all day yesterday (for work) with a hat and gloves (and 50 factor) and it happened again, hiding today and resting. 

Dermatology appointments are being taken now the nurse said for June/July now (mine at Withybush for end of June shock of shocks).  Will try again to see if I can be switched to Rheumatology..

Big hug on this sunny day...Maggielee

[Wendy39 in reply to maggielee]

Good to hear from you. My understanding of the current situation re Consultant dermy's is that our trust currently employs one. He is a Dr Patel and is doing clinic in Carmarthen. I have messaged Paul with my address to see what Lupus specialists he can come up with in our area. From the research I have done online there nearest specialist Lupus Centre in the Bath?!?! Let's see what Paul says. I am going to see Dermy this Tuesday for results of my biopsy (undertaken 12 weeks ago) and then re-group with my husband! Ha ha. Take care. Wendy 

[Wendy39]

I have now written a new post about my Dermatology appointment yesterday. It appears that my biopsy results showed lupus. At least that is what she said at first. Although it was a very strange appt and I have come out non the wiser to be honest. And no advice about how to treat that skin problem. Might be time to really think about getting a second opinion. Been told I can see the doctor who performed my biopsy and discuss it with him. Am planning on taking my husband and then following that we'll go elsewhere. Thank you all for your support.