[Marshmellow]

I thoroughly fed up and worried. Been back to the docs today because my hair has been falling out, I’ve had problems passing water, swollen lymph glands in my neck and armpits and my mouth is a mass of ulcers. He was quite shocked by my thin hair and inflamed mouth so I’ve been sent for more blood tests. I was hoping being on the increased dose of plaquenil would improve things-I know it takes time- but it just seems to be one thing after another despite trying to rest and eat well as much as possible. How much more can I do to look after myself and still get worse?
I worried my illness is completely out of control or will never get any better. I’m finding it emotionally hard to try to think positive and keep going. Some days staying under the duvet seems the best idea-although I have never yet given into this as I don’t want to lose my motivation compete and sink into depression (i do take prozac but not sure how much it helps)
Would love it if someone could just offer a hug or a ray of hope for the future?
Thanks
Rachel

 

[Nutty]

Hi Rachel,

Sorry to hear you are having a rough time with your illness. I can certainly relate to your situation. I have been "fighting" this disease for over 2 1/2 years and have not been in remission. It seems that I just get over one flare and start another, never really getting a break where I feel okay.

The latest thing that happend to me was nerve pain and muscle weakness in my knees that were caused by the quick increase of prednisone (from 8mg to 80mg in less than a week). However, I had to deal with the pericarditis. The knee thing was the kicker for me. I was proactive, fighting hard to get over whatever was happening. I lost my steam with the knee thing. Sorry, there is a point to this story LOL. My husband was very much the same way; always staying positive and taking very good care of me through every episode. The knee thing did him in too. So, surprising at the same time we decided not to fight anymore. It's not that we've given up; it's more acceptance of the disease. "It is what it is". Acceptance has really allowed us to cope better. Tomorrow I will be getting a wheel chair, because of the knee thing. I still can not walk after almost 3 months of this. That was a hard thing to accept as I'm only 46 years old. I also need a wheel chair when my lung is flared. So, I'm not giving up my hope to walk again, drive again, etc. I'm accpeting that this is what's happening right now, but it doesn't always have to be this way. I still have that hope but I'm not letting the disease run my life. So I will sit in the chair and do what I can do despite my limited use of my legs. I write music. I play the guitar. This is stuff I never had the time to do before, so that is good. My husband is always focusing on the positives as I'm a bet (well a lot) of a pessimist.

So, I think if you can find a way to accept what is happening, without giving up, you may feel better. I know it is an awful thing to deal with. Life is not fair sometimes. This board is great to have for support because everyone here knows first hand what we are going through. A lot of "friends" don't want to hear about it or they just don't know what to say. Ranting is also very healthy and safe to do here.

I sincerely hope things turn around for you Rachel. I've only shared what is working for me. It's so important, but hard to do, is not to let this disease become our life. So any way you can find to do that for you would be helpful. Again, I know it is hard when you are in pain 24 hours a day.

My thoughts are with you.

Nutty

 

[Maia]

Well, it may be time to inquire about adding additional medications to fight the lupus. Maybe a short course of prednisone or starting an additional DMARD drug like Imuran or methotrexate. There are other options to try still that may help you... so I would hold onto hope.

I'm glad the doctor is investigating further & is taking your condition seriously. Good luck with everything. (((hugs)))

 

[buffster]

Hi Rachel

(((hug))) Please don't feel hopeless or give up. I was just like you and felt that the disease was out of control and that I'd never get better, but I have moved and got an excellent rhuemy and suddenly things do seem to be getting better.

Def ask your dr about changing or increasing your drugs and don't be afraid to be a pest - keep phoning your gp and rhuem. till they do more to help.

Physically I am the same, but mentally I am starting to comes to terms with things more now, and I looked for free counselling in my area (Bristol) and got it plus I joined a women's therapy group to handle my anxiety levels and suprisingly enough it has really helped. I think I can now see that while I will never be as fit or strong as I was, I can still have a positive future and we are going to start trying for a baby!! So things do get more manageable, it just takes time and a bit of hope and using these boards.

Thinking of you xxx

 

[LolaLola]

Rachel, A few months ago I suddenly went into a flare that left me on two crutches and with two wrist splints, worse than I had been in ages despite loads of meds. It took a week of high dose steroids before I even started to get better, and I needed to increase my Methotrexate too. The point is I now feel much improved and feeling that bad seems unbelieavable now.

Sometimes your Dentist can be more helpful than the Doc. in dealing with mouth ulcers.
x Lola

And a Hug!

 

[keebler]

(((Rachel)))

What a time you are having.:hug:

It is hard not to feel down when everything seems to be happening one right after another. Dealing with a chronic illness isn't easy to do. Maybe you should visit with your doc. and tell him how you are feeling. If you feel Prozac isn't working there are other meds to replace that.

Hang in there we are here for you.
:hug:
Lyn

 

[confused1]

((((((((( Rachel ))))))))) Here's your hug, and if you need there are dozens more available. I understand your despair. I believe your doctor will pin down the problem and that (and here comes that dreaded phrase) "in time" you will feel better. I know, "in time" sucks. Really bad. But hold on and keep faith and come here when you're low. some of us who are also low will hold hands with you and we'll all howl together. :lol:

Please post about the results of your bloodwork. Maybe your doctor will act a bit more aggressively now that he's seen how miserably sick you are.

Hugs again,
Sunny

 

[Marshmellow]

thank you for the hugs

luckily my doc is really good and i have faith in him so hopefully something will show in my results that will help

we are considering immunosuppressants and i have had some chronic illness counselling which helps

today i am going to work on my MA research as i feel well enough to concentrate for a while and it is a good focus and distraction from illness for me

thanks again alll of you

Rachel

 

[Katharine]

Rachel :grouphug2:

I just wanted to join with the others and say that there are plenty of other treatment options on top of plaquenil and things do get a lot better.

Hang in there :hug:
Katharine

 

[Clare.T]

Hello Rachel

I'm glad today is a better one. You are coping so well with all the challenges of this disease, its up and downs and there are bound to be the downs both in health and coping ability.

I have always thought your doctor was very conservative and it sounds as if you might need additional medication at this point. I have no idea how long an increase in the Plaquenil would take effect but I have the impression it is rarely effective enough, just from reading forums of course !
I am going to mention yet again adding Mepacrine to the Plaquenil. This works fast and is especially energising. Even if you still need to go on an immunosuppressant you might manage with a lower dose. Maybe a tad of Pred could give you a boost.

Are you maintaining your weight?

Good Luck
Clare

 

[Marshmellow]

Claire

Thank you! It was my consultant who put me on plaquenil so i'm going to talk to him about mepacrine but they can't fit me in any earlier than end of Oct. perhaps he is conservative but then my bloods don't show a clear dx just UCTD so maybe that's why. I've never had a positive ANA despite lots of other typical CTD wierd things going on with my bloods and my symptoms and family history of lupus so maybe that's the reason. My previous consultant just laughed me off and didn'tn take me at all sewriously so i was just glad to find a consultant who does listen. I will be more assertiv ethis time though

my doc is fab and very thorough-he helped me get re referred as i was so poorly and the local consultant wouldn't take me seriously but i'm not sure if he can put me on mepacrine without speaking to my consultant so i will ask when i go for my blood results

i am maintaining what little weight i have but that's all-just under 7 st at 5 ft 5 is not great

thanks
Rachel

 

[lazylegs]

Hi Rachel,

Sorry to hear things are so our of control :worried:. I wish I could wave a magic wand and make you all better. Instead I am sending you a soft :hug:.

Take care,
Lazylegs

 

[LupusLyn]

"Lupus" book by Sharon Moore

Rachael,

I have read many books on Lupus, but one you might want to see if you may want to try to get is "Lupus, Alternative Therapies That Work" by Sharon Moore. She had Lupus so bad that she spent many years in bed, many weeks upon weeks in the hospital, her mom thought she was going to die.

Anyway, I could go on about how sick she was, but in her book she tells her story about how she cured herself 90% of her Lupus. She completely changed what she ate, chemicals around her and things like that.

She, over a period of 5 years used different nutrition, herbs, Chinese medicine, Tai Chi, Hypnosis, Biofeedback and more. She eats very little meat protein, brown rice at least 5 days a week, she makes a vegetable broth that she drinks etc. She spent her sick time studying and searching the internet for some kind of help.

Also, in her book she gives a one year plan on how the reader can slowly change their ways and come out feeling better in the end.

She really empowers you to want to try some of her remedies.


One thing I take for inflamation is tart cherry juice and linseed oil and it has made a huge difference in my joints. Maybe it would help you in some way.

Hope this information helps you, as it did me.

Best Wishes,

Lyn

 

[KarolH]

Rachel,

My heart goes out to you and I am sending gentle hugs to you also.

Maybe your doctor needs to increase your meds???

Possible IVIG or IVSM, but I am not a doctor.

I have had both treatments in the past and they help calm things down. This is when they thought it was MS yet regardless, it calmed things down. My preference is IVSM over IVIG.

Talk to your doctor.:wink2:

 

[Marshmellow]

thank you but i don't know what IVIG or IVSM stand for!!!! can anyone enlighten me?!!

Rachel xx

 

[greenhaggis]

Try this link for IVIG:

www.en.wikipedia.org/wiki/Intravenous_immunoglobulin

IVSM looks like a form of treatment used for MS cant find a useful link but try searching just for 'IVSM'.

Lesley

 

[Clare.T]

Hi Rachel

As far as I know, Intravenous Immunoglobulin (IVIG or IVIg) is rarely used for SLE except for autoimmune thrombocytopenia secondary to SLE, and is usually attempted only when all else has failed. It is often ineffective or the effects aren't lasting. It is also very expensive and potentially dangerous,
according to Dr Wallace who also says " IVIG is first line therapy for idiopathic thrombocytopenic purpura, IgG subclass deficiency and chronic inflammatory demyelinating polyneuropathy associated with SLE. It may be useful in other serious manifestations of SLE as a second line therapeutic approach in refractory cases "

I have never heard of IVSM and would be interested to know what it is.

Clare

 

[cad]

Hi Rachel,
Just wanted to say that i am sorry you are feeling so awful.
Just wanted to agree with others have said about trying other meds.
I would go back to your gp and basicly emphasise how diffiult you are findong things, sometimes its hard for docs to know how bad things are until we end up breaking down in tears and saying i can't go on like this anymore!!
You could ask your gp if he could phone your rheumy or e mail him for some advice re: other treatment.
Your gp can prescribe you pred or other non steroid anti inflammatories and pain relief aswell. I am plaqu and will be starting methotrexate as soon as i can myself to the surgery for my bloods to be done. As others have said quite often one drug isn't enough and it certainly doesn't seem to be in your case.

:there:

I really hope you get things sorted out soon

Good Luck

Take Care

Cassie

 

[greenhaggis]

IVSM - Apparently is Intravenous Solu-Medrol

www.drugs.com/pro/solu-medrol.html


Lesley

 

[jenniferali]

dear,Rachelsut,also my hair has been thinning,along woth swollen lymph nodes ulcres in my mouth and tongue.the PAIN is terrible have also had depression,BIPOLAR. when SLE attacks the BRAIN unusual things can and will occur. If you dont think your prozac is working for you,then try try again something else. i have had this disease for at least 23 years now. im on plaquenil and imuran, over 1 year now with no real results. but i HOPE other SLE patients get relief from this drug. and others as well.GET WELL SOON!!!!