[pamela b]

Hi
Can anyone help by telling me if this is part of Lupus or something else at all.
I was dx in May and at end of the month started plaq and a reducing dose of sterioids . The steroids eneded 2 weeks ago and I have been evil ever since with everything back to the same old place, pain, fatigue, nasuea and dizziness.
I have also had 4 urine (before steroids stopped )infections which have all been treatd but GP thinks kidneys may now be involved.
I now have severe back pain in the small of my back and need to urinate every half hour but had my urine dipped and it is clear
I also get up 6 times per night to go and so if that doesnt wake me the dreadful sweats do.NO wonder I am tired.
The rheumy says he doesnt need to see me until October and GP is a bit lost and has given strong pain killers which knock me for six so dont like taking them.
ANyone else ever had back ache or any ideas or is it just back ache as in normal as I never had back trouble in my life.
I feel very sorry for myself and also ashamed because I feel such a wimp

Pam

 

[x_claire_x]

Hiya Pam, if the steroids being stopped completely have made you worse why doesn't your rheumy consider keeping you on a low dose until your plaq has had a chance to kick in? Also sounds as if you could do with some kind of help to suppress any damage to your kidneys! I was diagnosed Nov 08 and have been on low dose pred.. having gone high with flares (X3) and then reducing again... been told to get to 5mgs and stay there for now. Got to then consider Methotrexate or myophenolate... all these meds have pros and cons but if you can get away with the least amount of intervention with the best quality of life that is a good balance... at the moment your balance doesn't sound very good. If your GP suspects kidney involvement you definitely need to go back to your Rheumy before October sounds like they are being very lax with your health to me...please push a bit harder for a referral back early and check your BP is ok as that can also stress your kidneys if it is high, and is quite treatable....don't mean to be bossy, but you have every right to good care. Take care and let us know how you get on.
Claire XXX

 

[debatat]

Pam, claire has given you excellent advice. You do need help now, go back to gp and demand some treatment, you can't wait till Oct and it sounds as though you need more treatment. I too hate to be bossy, but you need the doc to help you.

I hope you manage to get sorted.

Deb

 

[bugsy]

Hi Pam :wavey:

Sorry that you are feeling so rough, i think that you really need to seek more medical help by either seeing your gp again or if you feel that you are not getting any where then try a different gp. But as Claire said in her reply you really need to be seeing the rheumy before October, either have a word with your gp and ask him/her to send a letter asking for an earlier appointment or contact the rheumy's secretary and explain what is happening and suggest that you need to see the rheumy early, if you can't be seen early then ask if you can speak with the rheumy maybe he/she could give you some advise over the phone.

Its really hard to say if a problem that you are having is connected to lupus as everyone has different symptoms and problems. The back pain you are having could be just back pain or it could be a problem with your kidneys.

Good luck :luck: i really hope that you manage to get something sorted out quickly. Let us know how you get on.

Take care :hug: Jo :hug:

 

[Lily]

((((((Pam)))))) :hug:

Sounds like things have revved up considerably now you are off the Prednisone. That's not unusual, especially as your Plaquenil would not have had time to take effect yet. Also if you have had a string of infections then often they will stir the Lupus into action, that or the antibios used to treat them.

Are you able to take prescription strength anti-inflammatories? If so then they might help you a great deal.

I doubt your kidneys are involved as far as Lupus goes, because you would be showing protein and red cells in your urine if that was the case. There is no pain with lupus related kidney problems either as a rule.

If there was kidney infection then it would have shown up in the urinalysis and there is often flank pain and fevers. Flank pain meaning just below your ribs on one or both sides in the back, not pain in the small of the back. So not sure what your symptoms are representative of.

I hope that NSAIDS are something you can take because most of us need them as well as the Plaquenil to help control inflammation. Not Ibuprofen though because to get good pain coverage you would have to take far too much during the day and would be playing catch up all the time. Also it's not the best NSAID for Lupies generally.

Rest up and I hope things improve for you quickly.

love
Lily

 

[pamela b]

Hi
Thanks for your excellent advice
I do get pain in ribs but it has been put down as pleurisy
Whilest having the urine infections there were red cells, white cells and lumps something or other found in the lab testing
My Gp has contacted the rheumy last week and he says he does not want me on steroids and to see how I go for a few weeks as it may settle down.
She is a new Gp and very nice and rather at a loss as to what to do next.
May call her Wednesday as she only works 3 days ( she has very young children ). Maybe it will be better by then.

I have had blood pressure problems for over 10 years and also a heart valve problem which started last year when we think I had huge flare although no one knew I had Lupus, it was put down to a virus and bacterial pneumonia and a very bad sick bug.

Can anyone also tell me if it is normal to have worse joint pain on one side than the other ?

All seems very weird to me and I suppose I expect a miracle and quick fix which isnt going to happen in reality. Not very good at being sick, hate the fact that I need to spend long parts of every day doing nothing at all


Thanks for support and excellent advice
Pam

 

[Lily]

Hi Pam,

Under the bottom rib is about where the kidneys are located, so pain from them would be between the bottom rib and the very top of your pelvic bone, usually the pain is felt in the back.

You probably did have pleuritis, it's very common in Lupies.

It's quite normal to have red cells, white cells with a urinary tract infection, everyone gets that, even normals It's when you have red cells and protein with NO infection (i.e. no white cells) that a problem with your kidneys related to lupus is more likely.

I am guessing that maybe they don't want you on anti-inflammatories because of your heart problems? It's worth asking anyway, some people can still take them. If that's a no-no there are other pain meds you could have that will help you get through this interim time whilst you are waiting for the Plaquenil to do it's job. Pain meds stronger than Tylenol or Panadol. They would probably make a world of difference to you, especially now you are off the Prednisone.

Whilst Lupus is said to involve both sides as far as joints go, that doesn't mean at the same time necessarily. My right side continues to be my most troublesome side as far as knee/hip etc. but my left side as far as wrist/fingers etc. No hard and fast rules really :hug:

love
Lily

 

[x_claire_x]

HIya Pam, my right side is usually worse too, except in a big flare when they even out!! I find it strange that your Rheumy says no to steroids without even seeing you!! Perhaps he/she should walk a mile in your shoes.. in your pain and in your body!! I would be really naffed off if my rheumy advised me from afar!! Are they generally good? Do you feel like you are heard? if the answer to either or both is no... then maybe time to find another one!! I do hope it settles down, though previously your GP said they thought Kidney involvement possible so I would still think you need a sooner appointment than Oct with your Rheumy for assessment... and I would push for that
Hope you feel better soon,
Claire XX

 

[pamela b]

Thanks Claire
I know my Gp agrees I should be seen sooner than that and she phoned because she thinks I am suffering too much hence the fact he told her to give me pain killers ( tramadol ) but as I say they just knock me out so no good daytime.

I cant take things like Inrufprofen because it somehow effects the heart medication I need to take.
In reality as I said to some I am a bit of a wreck all in all
I am also finding the raynards impossible at the moment and as it is warm if in the car and other half puts air con on have to put gloves on or boy do my fingers bother me, although they are bad and I ahev little feeling so am constantly dropping things or breaking eggs as dont seem to be ablet o feel how much grip I have on things.
I dont know about anyone else but it is a strain on relationships this thing they call Lupus as I do try to keep a lid on things but often cant stop breaking down. I used to be able to do so much and now the smallest task seems like climbing a mountain. I also find I lose my temper all the time and I have also starting swaering madly, something I have never done. I think pain does things to the mind.

Thanks all
Pam

 

[x_claire_x]

HI Pam, pain certainly does things to the mind and to relationships, you will get to a better place though I am sure.. just plod on and on... you will get there. Have you had any meds for your raynauds? I am on nifedipine, not total solution, still struggle, especially in the supermarket.. had a checkout lady holding my hands at the tills last week exclaiming to all the others queuing 'this poor girl has that raynauds thing... you can wait til she warms up!!' Very embarrassing, very sweet of her tough:rotfl: luckily didn't tell her about the rest!! Pam, take care of yourself and know it will get better once they have got things under control for you, might take a bit of time, so keep going. I will be thinking of you,
Claire XX

 

[lazylegs]

Hi Pamela,

Sorry to hear you are so miserable right now. I suggest you call your rheumy's nurse and see if you can be put on the cancellation list if you can't get an earlier appointment.

I used to have the same problem with the air conditioning in the car. Now all the vents are aimed toward my husband and the ones on my side are closed down.

Take care,
Lazylegs

 

[keebler]

Hi Pam,

I have heart issues too. When I was first diagnosed with lupus.(found heart failure in Jan and in Dec. found out I had lupus) Which happened in the same year.

I was told not to take NSAIDS. After checking with my cardiologist he said it would be ok. But that is just my experience with it all. Maybe you could contact your cardiologist and see what he has to say.

I hope you get to feeling better soon.
Love,
Lyn

 

[pamela b]

Thanks all
I dont have any contacts for any nurses or anyone for that matter
Our lot use this daft choose and book thing which gives you no contact numbers other than the choose an dbook
I am on nothing but plaq at the moment.
When I saw my cardiologist early this year he banned anti imnflamatory as I also take aspirin for sticky blood and he said he did not want me to take them
I dont know why and maybe I should ahve asked. I see him again in SEptember so will ask again
I love the supermarket tale.

Everyone keeps saying it will get better but I am impatient, always ahve been as was brought up not to be sick and just get on with life, possibly why I am in this place now because I kept going far too long, and with hindsight wonder how I ever got to work,
Thanks all
Pam

 

[debatat]

Hi, you can phone the hospital and ask to speak to the rheumy secretary, she will then speak to the rheumy on your behalf. Sometimes you have to be cheeky to get treated!!!

Deb