[ColleenT]

Hi Everyone,

I was dxd with SLE & Sjogrens at the end of FEB this year. But looking back, I've had it for years. Little did I know that my doc had tested me for it several years ago. All tests were negative then.

Being 48 - which by no means is old - I did think that the joint aches and muscle pains etc were just part of old age creeping up. And who goes to the doc for a dry mouth? Lost my voice, had a sinus op, speech therapy. We put things down to stress and old age when we just don't know. Fortunately my GP was astute enough to realise all these things were't the norm. After having the occasional bout of hives (thought it was an allergy to something I ate) sore legs and joints I eventually had a flare with a high temp and I could not move!! Not even my jaw. Thats when the tests revealed in Feb that I was now pos (SLE & Sjogrens).


Went without meds for a while but have now been put on Celebrex for the joint pains. Been on them for about 3 weeks now and boy do they make my gastro intestinal system function on the trot! I get quite nauseous with it. Anyone else have this? The rheumatologist I saw simply said to me "this is a very good drug and don't believe anything anyone else tells you about it". HUH? Whats he hiding from me? Anyway I'm going to finish the course like a good girl and see what happens when I stop!

Also been thinking of wearing boots to bed 'cos my feet get terrible cramps at night and my ankles need to be kept straight (I think) so as not to traumatise the poor ankles. Those first few steps in the morning are agony!

After all that, I really am quite a happy and fun loving person! (would you believe it). Nice to be able to have a good ol moan!

 

[Maia]

Welcome to the site - we're glad to have you!

Is the only medication you are on - Celebrex?

If so, I would get a second consult with a different rheumatologist (preferably in a different practice) because you need to be on a disease modifying medication instead of just an NSAID. Plaquenil is the first line drug used in both Sjorgen's and SLE and you should be on it. Other medications can be used in addition such as Celebrex, or prednisone.

Plaquenil is so very important to lupus patients, and Sjorgen's patients too. It takes a while to take effect, but it will help with pain, fatigue, and rashes. It can even help with dry eyes/mouth but can take up to 2 years to help with those symptoms.

Take care, hope you're feeling better soon!

 

[Katharine]

I agree with Maia on the plaquenil or other disease modifying med.

Some people do use celbrex as an extra NSAID to help relieve pain. I also get nauseous if I take it more than two days in a row but I can no longer get hold of it anyway. There were some similar scares with it as with Vioxx and the doctors here rarely (if at all) prescribe it. Something to do with higher risks for people with history of heart disease (?).

Katharine

 

[ColleenT]

Thank you Maia and Katharine for the warm welcome and your help.

Its interesting that you recommend that I consult another Rheumatologist. My husband kindly went to collect all my results today because I had a very strange feeling about this doctor. Sometimes its good to follow your gut instincts.
I'll definitely make work of seeing someone else! Thank you!

 

[Joandublin]

Hi Coleen

Welcome to the Forum

You have been given good advice and if I were you I would definitely seek another Rheumatologist. Lord save me from those that treat their patients like idiots!

With your diagnosis you should be on Plaquenil as a base-line medication and often there may be a need to add in other medications like NSAID's. If Celebrex is not suiting you there are many other NSAID's to choose from so insist on trying others until you get one that suits. Try to find a Rheumatologist that specialises in Lupus. Not all of them do. You can use the 'Find a Doctor Forum' here to get some recommendations.

Welcome again and if you need any advice at all please keep posting.

Take care for now
Joan:rose:

 

[ColleenT]

Hi Joan,

Thank you for your warm welcome too! Its comforting to know I can talk to caring people who KNOW about Lupus!

Just a quick question: Does anyone have terrible foot cramps at night? I get them and its agony because I can't get my foot out of the cramp quickly. The cramp is in the soft part of my sole.

Just woke up with nightmares and foot cramps hence the early hour of the morning!!!!

Colleen

 

[halfpintfl]

Hi Collene, Please do go to see a different Rheumy. You should have gotten that "gut" feeling when he said to you"don't believe what anyone else tells you about this drug!" Celebrex causes a lot of people to get stomach ulcers. But you need Lupus drugs. As for your feet, I would ask the Rheumy first before I bind them or put boots on, I have had that and yes it hurts awful, but I just let it pass. Let us know how you make out.

 

[ColleenT]

Hi Halfpintfl,

Thanks for your reply. I think the Rheumys comment is exactly what made me sit up!! Been feeling okay lately......... just my shoulders feel as though they're collapsing. I think I lie badly on my side at night and then wake up with arm muscles that refuse to budge! But really been a bit better lately. Feet included! YAY!
Am on my way to Mozambique for a few days so this couldn't be better timing.

All the very best.
Colleen

 

[halfpintfl]

Hi Coleen, Yes, please get a referral to see a different Rheumatologist. Any Rheumy, in my opinion, that just diagnosed you as having SLE, and
doesn't put you automatically on Plaquinel, is a dr. to run away from. Let
us know when you get a new dr, and my fingers are crossed that you find one soon. Be well.

 

[weeelizabeth]

hi i'm reading all and seeing yourall on plaquenil or other things when i first seen the rhummy he put me on it for 9months then asked if i felt any different i said no,he ook me off them all i get now is naproxyn for inflamation co/codomol for pain,i think i need a new doc to,i have sle

 

[Clare.T]

Hello Elizabeth

Plaquenil is a very important medicine in lupus treatment because it modifies the disease meaning it calms it down and helps stop it getting worse. Many people continue with the Plaquenil even when other meds are needed and they have serious lupus problems. Many people find it is all they need to deal with their symptoms plus some NSAIDs or an occasional short course of Prednisone.

It sounds as if your lupus is not being treated at all, just a few symptoms relieved.
You should certainly seek evaluation and a full check up by a different doctor.
All the best
Clare

 

[Cinnylyn]

I'm curious about the call for plaqnil. Rheumy and gp agree that I showed symptoms of lupus, but is it that that last flare was long ago under control by the time I saw the rheumy? I did briefly take prednisone, and have taken nsaids, as well as anti-depressents off and on in the three years prior to the last worst flare... thank heavens have mostly been well (I feel blessed to move after what I went through except for the usual fatigue and stiffness). Again, by the time the diagnosis came, things were well under control... do you take plaquenil after a flare too? that is, is it on-going or just while symptoms are manifesting? I see my gp this week and will ask, but the more info I have going in the better.

 

[Clare.T]

Hello Cinnylyn

Plaquenil is often taken for at least a couple of years to make sure it has had every chance to get the disease under control.Then the dose will most likely be reduced and if all goes well, then stopped. However many of us take it for years, and plan to take it for ever because it has numerous very beneficial side effects apart from the obvious ones of reducing disease activity & thus symptoms and reducing the frequency of flares.
Many people who have required powerful medicines for organ involvement continue to take Plaquenil as a sort of ' insurance'.

We often notice the difference within a few weeks of stopping it. As one member here says, they will have to pry it from her cold dead hands.
Personal decisions about taking medicines need to be taken with full information about their risks and benefits Plaquenil has no more risk of serious side effects than many OTC medicines that people take without a second thought and when you are on it you are checked for signs of developing problems, rare as they are.


Clare

 

[ColleenT]

Hi Everyone,

Had a lovely little break in Mozambique. The weather was perfect and we watched the dolphins divining in the waves as we sat on the beach.

You'll be happy to know that I'm off to see my GP tomorrow morning and to discuss a new Rheumatologist.

Cinnylyn, I, like you, also felt so much better when the time came for me to see the rheumatologist and because of this I already felt like a bit of a fraud sitting there enumerating (or trying to when he didn't take calls) all my symptoms. Anyway, I have learnt from this and will be more forthright and firm on my next visit.

All the very best
Colleen

 

[ColleenT]

The dolphins were DIVING ...........sorry..............not DIVINING!
Colleen

 

[pennylp]

Hi there Colleen,

You are sure coming to the right place to moan... We all do that... And it is wonderful because we all understand and have sympathy for each other...
Welcome to this wonderful and caring site... I am sure you will enjoy coming here as much as I have... You get to vent , find out information, and make wonderful friends...
I have been on celebrex for years... it has helped me quite a bit... I hope it helps you also...
Hope to chat with you soon, remember we have a chat room...

Love Penny

 

[KarolH]

You mention the cramps at night and I can completely understand.

I get them and they are horrific!!!

I do think from what I have read that you should have been placed on Plaqunel right away.

Maybe another doctor for another opinion is warranted?

Good luck with up coming treatment decisions.

 

[ColleenT]

Hi Everyone,

Haven't been around for a while! Sp here's a quick update.

My GP has recommended another Rheumatologist after my long sob story about the one he first advised me to see. He was so kind and understanding but also a true professional, never expressing any inclination to take sides. He has now advised me to see a Professor M. We think he must be away at the moment but I'm hoping for an appointment soon.

At the moment I am feeling so well..........and I simply can't bear seeing someone when I'm actually really feeling rather OK! That whole "feel like a real fraud" thing. Lets see what happens.

About the foot cramps at night, some have said have more salt, and other have said srink more water! Have tried but can't say its improved much!

All the very best
ColleenT

 

[KarolH]

Welcome,

I am new here myself.

Foot cramps are one thing I deal with every day. I have not been dx with Lupus yet. I go back this coming Wednesday for the Yes you have it or No you don't.

I was dx with MS in 2005 and muscle cramps are horrible.

I take a drug called Baclofen and it works great. There is also Zanaflex and others as well. Talk to your doctor and ask for something. No need to suffer.:wink2:

 

[ColleenT]

Hi Karol,
Thanks for the welcome and its really nice to "meet" you! Will definately mention the cramps when I get my app.

I've been thinking that perhaps for about 2 or 3 days before I see the Prof, I'm going to stop taking my Celebrex to see what happens. I'm sure I'll be more accurate in describing all the little problems!

Just out of curiosity, is muscle cramping a symptom of MS? Is it just your feet that cramp or other muscles too? I really do hope you don't have SLE as well as MS. That just isn't fair! :sad:

I wish you all the best!

ColleenT