5 more sleeps

[Someonesmother]

5 more sleeps until I see the rheumatologist after being in horrid pain and extreme fatigue since April. I so hope he has an answer and I can try a new bioologic. I guess the wait will then be for approval to have it. So maybe another three months. I really need to start to feel a whole lot better than I do or I am not sure how I will keep working full time and I really need to.

[popsmith1874]

Hi there hope your not in too much pain today, it really is a sign off the times when we are looking forward to a hospital appointment and I've got one in 3 weeks ,at the moment I'm not too bad as I've started a new biosomar Benepali a newer version of Embrel but it must be cheaper , this is my 3 week and no problems so far.Its my OA that's playing up at the moment and my lower back is killing me hope y have a pain free day xxx

[Someonesmother in reply to popsmith1874]

Oh sorry to hear that. I also have lower back problems among other things and RA. I am on enbrel at the moment but I suspect it has stopped working. I have had terrible pain, swollen joints and fatigue since April.

I also suspect the government will start making us use biosimilars here too. I have heard they are not as effective and have way more side effects than the 'real' thing. I already can;t take generic medicines so I have no idea what would happen with biosimilars.

[sylvi]

Best of luck to you darling.xxxxx

[Someonesmother in reply to sylvi]

Thanks Sylvi

[Hidden]

Hello - just popped on to say that I really hope things can speed up a bit because it's intolerable for you to suffer so much.

My news is that my lip biopsy showed up a clear positive for Sjogren's. I think this makes Sjogren's my primary disease rather than just a nuisance secondary - which should at last help me access further meds - most likely Rituximab or mycophenolate (since I have the signs of early renal involvement). Onwards and upwards. X

[Someonesmother in reply to Hidden]

Oh Twitchy good news and bad news. have they caught the renal side early? Good news that you can now try some medications and hope they work and don't give you terrible side effects. I guess I will just have to wait and see what my next drug will be.

[Hidden in reply to Someonesmother]

It's a scary prospect for us with new drugs isn't it? I've found and joined the only HU for people with Sjogren's - in Austraila! X

[Someonesmother in reply to Hidden]

Hahahahaha well we can just cross the oceans together with our cyber chatter. My sister with Lupus has secondary Sjogrens.

I am not looking forward to new drug it scares the hell out of me. It may be Humira, that seems to be the next go to one, not sure. What ever it is will have to be a liver friendly one.

[Hidden in reply to Someonesmother]

Most people with RA and Lupus end up with secondary Sjogren's - not at all the same as primary Sjogren's which is equally severe to lupus and RA. It seems to cause a lot more systemic, extra glandular problems for many sufferers rather than just sicca and dry mouth. Many have secondary Lupus, scleroderma and RA with it from what I can gather.

[Someonesmother in reply to Hidden]

So far so good for me. I had the test about two years ago and biopsy and it was clear although they said that it was borderline. Yes I have heard that they have more issues too. My sister has terrible kidney issues.

[Hidden in reply to Hidden]

To quote - in case you are interested in the history as it will mean more to you than me: "The Australian Sjogren's Syndrome Association Inc. was incorporated in Parramatta in 2001, although due to illness of the founder, the association did not commence trading until June 2004 in Mullumbimby, Northern NSW. The name of the founder and president is Ms Beverly Norton. Background The Association was started by Beverly Norton who, in May 2000, was diagnosed with Sjogren's, a disease that Australian doctors knew very little about. Sjogren's (pronounced show-grins) syndrome is a chronic, autoimmune disorder in which the body's immune system mistakenly attacks its own moisture producing glands. The specific causes of Sjogren's syndrome are not known, but multiple factors are probably involved. These include genetics, viruses, hormones or a combination of all of these. It is critical that it is identified quickly and treated otherwise it can be fatal."

I'm hoping the last comment is an exaggeration- but people with primary Sjogren's are 44 times more likely to get non Hodgkins lymphoma.

[Someonesmother in reply to Hidden]

Could be. I know all those places and used to live up near Mullumbimby. Lovely lovely spot. I am just going with the flow these days. after having two strokes last year I figured I have come pretty close so I am just going to enjoy life as much as I can. do the thin gs I want to do and hope for the best. I do get frustrated when this sort of thing happens as I was going along Ok there for a while, not out of pain but at least the fatigue was under control a bit. I don;t think the enbrel ever really worked like I hear it does. Most people talk about it like it is a miracle and they feel amazing. I never got that.

[Hidden in reply to Someonesmother]

The place names do sound lovely I must say! But it doesn't always work like this does it? I know sometimes I've gone to a little spot in Scotland with a lovely name only to find it's a dump!

I know what you mean about wanting to just get the most out of life. I feel the same way about working as an artist. My ambition to paint is back and I save my spoons as much as I can in order to have some studio energy. Fatigue is the pits for me just now too so I only get a few good hours at most but it's so transporting!

Maybe you need the infusion biologics now? There is someone on this HU with primary Sjogren's who is on Rituximab infusions so I'm hoping perhaps this might be an option I am given. I don't think people with the connective tissue diseases benefit from the anti-tnfs as I never see them mentioned on Lupus UK or the Scleroderma site.

As you are complex it might be worth researching whether you have another CT disease again - especially of your lip biopsy was borderline?

[Someonesmother in reply to Hidden]

The north coast of NSW is god's country, I loved living up there, just no jobs.

I have started painting again too, it is something I can do that doesn't take too much energy and I can do. I do Aboriginal paintings. Working full time cuts my time down to when I can get the energy together ion the weekend after I have done everything I need to do.

No I don;t think they do as the disease acts in a different way. I have never heard of anyone with CTDs on them. I have no idea I have just been told sero neg RA. Mind you I have so many other things going on too as the rest of my body must have felt lonely. hahahaha

[Hidden in reply to Someonesmother]

Well go with whatever diagnosis feels right to you.

They persisted with the seronegative RA for me but apparently the neuro symptoms have made my new rheumy think this was the wrong diagnosis after all. My hands are tight,very stiff, painful in the knuckles of both hands are increasingly swollen every morning - but people with lupus and primary Sjogren's get this type synovial swelling too. So I'm happy if diagnosis of Sjogren's helps me progress away from the SN RA diagnosis at last and insistence on swollen joints in order to fit criteria for more drugs

Take care SOM and keep painting when you can! X

[Someonesmother in reply to Hidden]

I am feeling it is probably heading for the right diagnosis as my ankles and feet as well as fingers, knuckles, wrists, knees, shoulders etc are all so painful. I can hardly walk at the moment, it gets to the point I just want to get a scooter and never have to put my feet on the floor again hahahah

well let's hope you get a good Dr who will look after you this time. You have had such a bad run with them as well.

[Simba1992]

It really makes you wonder if eating all these toxic meds do have a longterm effect on the development of other AI diseases. I have understood that researchers worry about the longterm effects of the RA meds on the immunesystem and of the limited number of studies and research on this subject.

[Someonesmother in reply to Simba1992]

Unfortunately RA is not a 'sexy' disease like some of the others so doesn't get the research $ that some do. So I guess we keep taking the drugs to try and have some sort of normalcy in our lives and be able to function for a bit longer

[Simba1992 in reply to Someonesmother]

Oh but RA is very sexy to Big Pharma. The symptom oriented line of treatment has been very lucrative. More and more meds are approved for treatment of RA symptoms. This is necessary since the meds have effect only a limited time, or cause side effects that endanger the life of the patient. These meds work for about 50% of RA sufferers the other 50% is seldom offered alternative nontoxic treatments or information about their existence. This is really a shame since there is an abundance of anecdotal evidence that they have worked for many. Big Pharma is not interested to fund any kind of research that would jepordize the flow of money. The big news in treatment of RA are the possibilities of stemcell therapy, which has been received with less enthusiasm by the pharmaceutical companies.

[Someonesmother in reply to Simba1992]

Stem cell therapy is a exciting field and may be the wonder treatment for many diseases. I guess I will be dead long before anything is done for RA but I hope they do some research and find a 'cure' for the others who will be struck down with this.

[Sheila_G]

Sending best wishes. x

[Someonesmother in reply to Sheila_G]

Thanks Sheila_G