Another Newbie - from London UK

[Barbara Elizabeth]

Hi everyone, I am Barbara Elizabeth, married to Roy with 4 children, three adult and a 17 year old daughter doing her A levels and preparing for university.  Well, to get to topic!! diagnosed with RA July 2009, put on mtx.  Feb 2010 on hydroxy, April 2010 on sulfasalazine.  At rheumy last Friday, 2nd July, consultant then says, I think you have been misdiagnosed, i think you have Sjogren's Syndrome.  Ok, says I, so now what?  Oh, says he, you are already on the right meds, so no problem!!  I was in so much pain I had to hold onto the furniture to get into his consulting room, so didnt really answer.  He asked if I had heard of Sjogren's, I said yes, as already being told you have an AI you tend to look up about others.  He kept saying oh poor you, and put me back on prednisolone, which he told me to come off in April, and I weaned myself off around 3 weeks ago.  I have to see him again this Friday, and will say that if I am on the right meds why dont they work???  I have swelling, redness around joints, lots and lots of pain!!! dry mouth, eyes, skin, trouble swallowing etc, bloodwork only shows elevated rheumatoid factor SSA etc show normal.  He wants me to have the lip biopsy test, dont know when yet.  Can you please tell me, is it normal to have so much pain swelling and redness in joints with Sjogren's? as everything I have read states that it is mainly the dryness etc and a small amount of pain and no swelling, which can be relieved by simple pain meds.  HELP!!!  I also have fibromyalgia, had partial thyroidectomy in 1986.  Also do you get nodules on fingers etc, and finger joints in general that bend out of shape and get fixed until you pull them back?  Sorry to waffle on, but I have really had enough now, it just gets worse, and diagnosis is a joke!!  I have had the schrimers test, eyes were very dry, thats all he said.  Thanks everyone

[Katybarstool]

Hi Barbara Elizabeth

Welcome to the family. I'm sorry you are in such a quandary just now, but am sure some knowledgeable people will welcome you soon.

As far as I understand it, you can also have rheumatoid arthritis (and other forms of arthritis) as well as Sjogren's. I think if you have rheumatoid, then the Sjogren's is considered to be secondary. I have nodules on my fingers and toes. This is a form of osteo arthritis (OA) called 'nodular arthritis'. I also have OA in my knees and hips, and possibly the bottom of my back.

You will see from lots of posts that many people take the Plaquenil. I'm in the UK (West Yorkshire) and have only been formally diagnosed for three years. I was finally given the Plaquenil last week. There is a recent thread entitled 'What does Plaquenil do'. You will see informtion there also about Methotextrate.

Looking forward to getting to know you.

Kathyx

[Barbara Elizabeth]

Hi Kathy, thanks for the kind reply.  Another problem is that I work as a childminder and dont know what to do about this.  Not only is it so hard now, but what to tell parents do I have RA do I have Sjopgren's or both?!!!  Auto immune illnesses dont make life easy do they, take care 

[Shani]

Welcome!!I'm afraid I can't really help with this.I do think a good Rheumy would be needed, or atleast asking him/her what's wrong with you.As the Ra factor was seen?And well hope the lip biopsy when it's done, gives more answers and makes it more clear.Fingers crossed!
Big hugs to you.

Lots of love
-Shani

[Carolina]

Oh Dearest Barbara:

I don't know much, but redness around the joints speaks to ME of Rheumatoid arthritis more than anything.

well, and Sjogren's on top of that?  and Fibromyalgia?   That is just not FAIR.

Ok.

I guess you've figured that out already.   Yeah, they're all auto immune conditions and you can have them all at once or separately or in any combination.   Like a Chinese menu.

Ok

Well, I'm not sure that adding any diagnoses will change the course of treatment.  Mostly Sjogren's is treated for symptoms (dry eye and dry mouth, for example, with medications to increase your saliva and soothe your eyes and throat and lungs and god knows whatever else is involved).

I have osteo arthritis which produces nodules on the affected joints which hurt like blazes when they pop out and they distort my fingers, BUT I can't pop anything BACK with OA.

OA is on the last and middle joints of my fingers.  RA is usually on what we call the knuckles.   OA is very common with no real treatment except for pain.  RA has more treatments, but is way more dangerous to your over all health. 

I imagine you need to be on the alert for progression to Peripheral Neuropathy ( nerve damage in your arms and legs) and Autonomic Neuropathy (nerve damage to things like your heart and gastro intestinal system).  Those joys seems to accompany the other diagnoses that you have.

Keep us posted.

Oh and welcome to Team Sjogren's.  I for one have always been sero negative, which means I have a bunch of stuff which may not even BE Sjogren's, but fits into the set of symptoms.  I haven't had the lip biopsy and don't imagine anyone will want to do it at this point.  But who knows.

I'm seeing a new Neurologist next week and will find out what he thinks we should do next.

Again, welcome, this is a great place to share your questions, concerns, frustrations, whatever!

Kisses

Carolina

[Barbara Elizabeth]

Hi Shani, thank you for the reply, I have been seeing the Rheumy for a year.  In UK once you have the positive rheumatoid factor you get referred straight away.  Just in a difficult situation, I have firiends who say, Oh you cant give up work, as you will be bored!! and, of course, people who understand the AI illnesses say, give up now, you cant do this to your body!!  I dont want to let the parents down, but I dont know what to tell them as I dont know myself.  Thank you for your help, will definitely be on here when I can for support and knowledge x

[Barbara Elizabeth]

Carolina, thank you for your lovely post!!  so much knowledge!! I think the Rheumy was looking at neuropathy, as I think its to do with pins and needles and numbness?? he asked me about this.  Will re read the post later when finish working with the little ones later.  Looking forward to getting to know you all x

[Scottietottie]

Hi Barbara Elizabeth 

Welcome to Sjogren's world.

It's not uncommon for SjS to be secondary to RA. I'm not medical in any way shape or form though.

If you would ever like to talk in 'real time' to other sjoggies in the UK (and one definitely also in London) please join us in sjogrensworld chat at 7p.m. on Wednesday evenings. Actually - sjoggies from everywhere but its the only chat hosted by UK hosts.

Take care - Scottie 

[Barbara Elizabeth]

Thank you Scottie, will remember that, 7pm on Wednesday, sounds a lovely idea x

[Scottietottie]

Hi 

It's usually fun. We have a laugh but can also be serious if need be! 

[Bucky]

Hi Barbara Elizabeth . . . welcome to the fold.  Hope you find this site informative and helpful to you. 

As a chat co-host myself  (different day)- you never know what topics will come up during a chat session.  As Scottie mentioned - some times we are serious and answer / offer suggestions for members concerns, other times we are silly and laugh.  Usually, someone will offer some type of cyber snack during chat . . of course, calorie and guilt free.   

Again, welcome.

Bucky

[Barbara Elizabeth]

Bucky, i love the cyber snack idea!!! i am definitely up for that!!!

Saw my Rheumy today, and he has referred me to the Sjogren's clinic, so i await the letter, he says he is not clear on whether its the RA then the SjS or other way around.  Oh well, will have to wait and see what happens next.  Thank you everyone for the lovely welcome x

[harrigan]

Good to 'meet' you Barbara Elizabeth.  We seem to have similar but opposite stories!  I was diagnosed by a rheumy with SS last March and started on plaquenil.  I didn't really make much progress and was really poorly by Christmas with swollen red joints in fingers, wrists and feet.

My GP referred me to a new rheumy as the first one said I definitely did not have RA.  The new rheumy said it was RA as soon as she saw me and looked back at my blood results and saw that the original Dr had missed my raised rheumatoid factor.  She started me on MTX in February.  She said my SS is 2ndry.  I would be wary about accepting a diagnosis of SS without proper investigation into RA.

As I had almost a year without adequate treatment, my RA has been hard to control and I have just started on Leflunomide today.  Hope you get the right treatment Barbara - keep posting and let us know how you get on.  I'm Ailsa, by the way - in Warrington Cheshire.  I also have a daughter in Y12  (one of my 5!) so understand how anxious this time is.  Take care, Ailsa XX

[Barbara Elizabeth]

Ailsa, thank you for the post.  I saw the rheumy again on Friday, and took a list of questions with me.  The first one being that if I had a high RF can the SjS cause all these problems with pain swelling etc.  He said, yes, but its a combination of the two.  He didnt say which was primary, so I am still a bit confused.  I have been on the triple therapy without success, and he is now looking at Leflunomide at my next visit, which luckily, is next month as he wants to see me monthly until everything is under control.  I am very happy about this as its been a year now and nothing has improved, in fact the pain and swelling is worse than at diagnosis.  He has increased my pregabelin (Fibro) and also the hydroxy as I said the tramadol doesnt work for the pain.  I am going to ask for patches if no difference by then.  I am back on the pred at 15mg after being told to come off completely, even though I said that at 5mg the pain was becoming bad.
Thanks for telling me about your experience, it doesnt give you much confidence does it??  Initially I was told RA, then he said its a misdiagnosis, its SjS and now its both - plus fibromyalgia!!!
In with all this I work full time as a childminder/nanny for two little ones under two.  I told him this is becoming impossible, and he said he understands that after seeing me last week having to hold onto furniture to get into his room.  So, a waiting game again. 

What drugs do you take if you dont mind me asking?  I am now on mtx hydroxy tramadol pregabelin and then blood pressure pills and thyroxine plus a stomach protector - nexum.


Thank you for the message Ailsa, please let me know how you get on, take care x

[Barbara Elizabeth]

Ailsas, sorry, just looked at bottom of your post and the meds are all there!! need to pay attention!!