Feel very demoralised

[tjperfick]

Apologies in advance for the long and rambling post.

Haven't been feeling great lately and had an appt today at the hospital.

For me one of my problems is rashes and tiredness - seem to go hand in hand and was diagnosed 2 years ago with sub cutaneous lupus with some systemic threads ( also raynaulds, hypermobility as well)

Rash has always been a problem and came to a head last summer when GP put me on a course of oral steroids as I was covered in it and was literally using a tube of sream every application. I have constant flat malar rash on face and neck, with larger lesions on back, shpoulders neck and chest. The result was instant and lesions disppeared after a five day (20mg per day course) also felt so much better in myself. Rash soon came back and this continued until November when the hospital tried me on azathiprine. Unfortunatley could not tolerate this and made me very sick. To cut a ling story short have been on steroids ( varying tapering doses) since January. Am not down to 10mg per day ( tapering by 1 mg per week) and boy is my body feeling the effects of it. For the first time in about 8 months my rash is back with a vengence and I feel so ill also. I am also haviong trouble getting on top onjoint/muscle pain and have got swelling around the cheek bone area and shoulders and chest.

I was feeling quite happy thay rash etc was flaring ( so I thought) today when I was at the hospital so they could see it. BUT no, because I had no lupus markers in bloods in Feb, they insinuated I have not got lupus.

I did point put that in Feb at my appt then, they mentioned about positive lupus markers then, but this was ignored. The doctor kept telling me that the rash was caused by steroids. Mentioned dry mouth which is giving me problems, but just said no ulcers, no problems. Said no joint involvemene, but when he examined me and I winced at pain in knee and elbow asked me did he hurt me!!

To top it off asked me 4 times to do a urine sample - each time I replied that the nurse already had it. I really felt that he was not liste3ning to me at all and had a tick list of symptoms and because I have no joint swelling ( got obvious pain though), no mouth ulcers (but very sore roof of mouth, gums and dry mouth)

After querying Lupus, he then advised of new meds to try and that he would ring this afternoon - no phone call as of yet. I wish I had have asked him if it is not Lupus, what are you going to do to try and find out what is wrong with me then.

Did not even do any bloods today. When the last lot of bloods were done at beg of Feb, I was literally flying then no rash, loads of energy, pain controlled etc, so was not surprise that there were no markers.

What do anyone think I should do now? I am tempted to try and find a new consultant ( maybe one who is sympathetic to sero negative bloods) By the way my original diagnosis was made by a dermatologist.

Sorry for the long and whinging post.

xxx

[misty14]

Hi typerfick

It's a long , hard battle for diagnosis and treatment, some days we're up for it , others not!. You could ring the Consultants secretary and say you were expecting a call from him and you haven't had it and leave a message .Don't let this go especially as he talked of other treatments. Good luck. X

[tjperfick in reply to misty14]

Thanks for the reply, it wasn't my normal consultant that I saw but a registrar.

Woke up this morning and justfeel "what the hell". Look in the mirror and think I cannot be bothered fighting any more. xx

[misty14 in reply to tjperfick]

Hi typerfick

Seeing registrars can be so unhelpful, no wonder you didn't feel listened to and he shouldn't have promised something he couldn't do!. I don't wonder you feel as you do!. As your rash is so extensive and dermatology diagnosed Lupus from it I'm wondering do you have a follow up appointment with them?.They could work with your Rheumy to treat you. Just a thought. X

[tjperfick in reply to misty14]

dermatology discharged me 2 years ago. Am seriously thinking of changing Rheumy's and am going to have a chat with my GP next week. He noticed first hand how the steroids used to clear the rash up. My normal Rheumy is also of the postive blood test school of thinking also. At one point the registrar yesterday was also querying the hypermobility diagnosis given to me by my Rheumy 2 years ago when I first saw her, but I pointed out that it was the hospital that diagnosed it. It just seemed to be that everytime I pointed out a symptom he pointed something I don't suffer from.( Dry mouth, no ulcers = no problem!!) Also made me sore when pressede joints and then said no joint problems. Just thought that yesterday I had some really visible symptoms for the first time in a long time and was totally ignored. thanks for your reply. xxx

[misty14 in reply to tjperfick]

Hi Typerfick

I think your plan to talk to your GP about changing Rheumy's is a good one. You need one willing to treat you without the bloods and they do exist. I have had a similar battle with my new Rheumy, it's taken four years but he's suddenly become more understanding of having inflammation without it showing. I couldn't believe my ears when I saw him last week. It's awful having real symptoms and not being believed!. Good luck. X

[tjperfick in reply to misty14]

Thanks, I am also thinking of writing in to my consultant and informing her of my clinic appt and its outcome and my feelings about it. Where abouts is your sympathetic Rheumi based? xx

[misty14 in reply to tjperfick]

Hi tjperfick

I think it's a good idea to write to your nice Rheumy Consultant about how unsatisfactory your appointment was and why but be careful not to openly criticise the registrar!. This is where diplomacy skills are needed to negotiate the medical profession!. Ask her if you could be given an appointment to see her as your worried about your symptoms. My Rheumi is in Barnstaple Devon and whilst he's a good listener and up to date , he can be tough and has been with me over inflammation and bloods. Taken me four years for recognition on this so I'm not sure he'd be right for you?. You've given all this a lot of thought . Good luck this week. X

[L-2day4u]

Dear Tjperfick,

I feel for what you're going through. This has hapened to me so often that I took my muscle biopsy & diagnosis of dermatomyositis (my 2nd autoimmune disorder) and pos. lupus bloodwork with me to any fairly new doctor. It has worked amazingly well. I did it because specialists often said something like "I don't think you could have a rare condition like that"(well someone does!) or" only neurologists diagnose that, so if a rheumatologist did it must be something else"(both diagnose it) or "you can't have that because your CPK isn't high"(my GP said that,not being well read yet she didn't know that every case looks a bit different). When I had the DM rash around my eyes, the doctor who replaced my rheumy after 18 years demanded to know if I was wearing make up! He could have looked at my chart and the years of chemo I'd had for it??!

My old rheumy said that the patients who do best get to know their condition (because doctors forget rare conditions they learned about in med school, or they forget what the patient's labs were before). I was shocked by a general level of ignorance about my autoimmune muscle disease (and even about lupus), but I had to learn diplomacy. I'd bring the last positive test in to a new coctor and just ask some bland question about it, so they don't feel challenged but they remember you had positive bloods previously. Even that doesn't always work, but it sure has cut down on the total disaster appointments...

Prayers your way,

Anne

[tjperfick in reply to L-2day4u]

Thank you for your kind reply. I have been thinking about it since yesterday and realised that the doctor brushed off/glossed over some of my more annoying symptoms yesterday ( dry mouth - how to ease?; swelling around eyes and cheekbones - what is this causing this?)

Feel like it was a total waste of time and makes me reluctant to seek medical advice in the near future. xx

[L-2day4u]

Dry eyes and mouth often accompany autoimmume disease, and can appear years before the illnesd becomes "clinical." So we hear about people having "sub -clinical lupus," etc. Eyes can be so dry that one's cornea gets damaged, causing blindness. Dry mouth van also cause other health problems. There are over-the-counter artificial saliva drops and eye gels with propylene glycol to conserve moisture. Even w/o Sjogren's blood markers, my eyes were so dry it was dangerous, so they did procedures to plug the "puncta" that drain tears--causing years of much relief! The Sjogren's-like dryness is caused by the immune system attacking glands that create lubrication glands. Perhaps a different specialist can be of help for you.

When my illness first hit, it caused trouble swallowing and the GI doc I saw told me it was "stress" and then called my new GP asking if I were some hypocondriac. Many doctors have made me miserable! But after consideration, I had to mentally take charge as if I were taking a priceless car to a mechanic. They sometimes insist on undue respect or obedience, but if we need a certain service, we either blow that off or politely or "fire" the mechanic and get a competent one. For some reason it feels more difficult to "fire" a doctor (and it needs tact), but few of us would let our only car not run because the first few mechanics didn't know what was wrong with it. If it was a foreign model, we would probably look into getting some answers for ourselves until we found a good specialist. Of course our bodies are infinitely more important. Since I had a baby depending on me, I brushed aside Dr. X's poor attitude and ignorance, found the diagnosis myself, and then tactfully asked my GP to run a few tests. Soon my diagnosis was confirmed and the correct treatments had me out of pain and walking again!

When I read that crowded clinics had a lower survival rate than private practices, I found the personal number of a veteran rheumatologist and called with convincing evidence of my rare condition. He got me IVIg (that clinics said doesn't work due to expense) and soon discovered that big clinics sure don't do as well! Quality and quantity of life are at stake, and there are many ways to improve with lupus (or DM) w/o just listening to one doctor. My old rheumy retired, but he appreciated my interest in autoimmune disease and had long conversations with me on it. He himself had developed one right after a bad intestinal bug from drinking contaminated water, and knew infections often played some role: parvo b19 (fifth's disease), and other viruses are suspect as well as a lack of suficient vitamine D. If you Google D, you can see a relation has now been proved (though just having more vitamin D isn't the only answer.

Well, sorry I went on so long. I just feel your situation and hate to see one doctor's ignorance get in the way if a person's life! I'm praying you'll soon feel up to getting s better "mechanic,"

XX cheers,

Anne

[L-2day4u in reply to L-2day4u]

Oops, sorry for all the typos! The keys are tiny on my nook (resting while writing), but the medicine names are spelled correctly.

[corinder]

Sorry you are feeling so down and haven't found the right doctor yet. I think k it is worth your while trying the elimination diet in Dr Giraud Campbell's book, "A DR's Home Cure For Arthritis". It certainly helped me. I could hardly walk at one stage. People with Lupus have leaky guts which lead to a bewildering variety of symptoms as foreign proteins share antigens also found in our bodies.

Good luck

Corinder

[madhead]

Hi tjperfick,

if i was you i would ask to see another consultant, i work in a Diabetes clinic and i have had patients demand to see another consultant and it works, you have to kick up a stink and stand up for yourself, only you know how your body is and how you are feeling, there are sympathetic Consultants out there.

try it!

good luck x

Madhead

[tjperfick]

Thank you for your reply, I am going to wait and see what my consultants reply is and take it from there. Feel a little calmer today, but still full of a rash - getting worse by the day and will prob not ease whilst steroids are bein tapered but get worse. Worse still weather is supposed to turn warm andsunny next week. Not great news for us all. xx