[donna kosk]

ive been given doxycycline tablets by on call doc and pain im in now with my joints and they are burnin to since startin these tablets. i was given them for plurisy but now im in more pain so just like to share the infor about these tabs as people with sle should,nt really take um as it says on information leaflet goin to go and so my own gp on monday mornin.

if any1 has took these tablets whot if any problems have you had



thanks

 

[Katharine]

Hi Donna,

If my understanding is correct doxycycline is a tetracycline antibiotic. If that is the case then I think that indeed, they shouldn't be taken by lupus patients as they can worsen or bring on lupus symptoms. It is one of the drugs that can bring on Drug induced lupus.

It sounds like stopping them was a good idea and going to see your GP ASAP as you do still need to get your pleurisy under control.

Katharine

 

[Clare.T]

Hello Donna
I'm sorry you have had such a bad reaction. It is probably best to avoid doxycycline and the other "cyclines". I think they can cause joint pains in people without lupus too and although it is minocycline that seems most involved with lupus related issues, the manufacturers warning emphasises the doubts there are about these drugs and lupus. Sounds very remiss of the on- call doctor ! And the importance of reading the folder.
Is your pleurisy due to infection ? It can be caused by lupus itself in which case there's no point taking antibiotics.

I hope your GP can offer more help.
Cheers
Clare

 

[donna kosk]

ive ad plurisy 4times in 12months nd sick of gettin it .ive not stopped takin the dexycycline but im goin to see my gp in the mornin but now im in agony nd a bit light headed sick of doctors messin up thinkin of just sackin the lot of them.they just dont no what there doin

 

[Lily]

Hi Donna (((((((((hugs)))))))))))

If your pleuritis is due to Lupus then no amount of antibiotics will help it, you will need to get the lupus under control for that to happen. What meds besides Prednisone did your Rheumy prescribe for you that didn't agree with you?

It's true that a lot of people can't take Doxycycline and that worsening of lupus symptoms is a possibility. Sounds like that's what's happening in your case I'm glad you are going to see your own GP tomorrow. I would try and get an appointment with your Rheumy whilst this is happening and also to address the pleurisy issue, your GP might be able to get you in earlier because you are so unwell right now.

I can't take penicillan or sulpha based antibiotics, but I did have to take doxycycline last month for a very bad chest infection. Luckily it agreed with me and cleared the infection up. It's not the right treatment for pleuritis unless there is some kind of infection involved though.

love
Lily

 

[KarolH]

Hi Donna,

So nice to chat with you the other night. As I mentioned briefly to you, doxycycline almost killed me.......literally!!!

I was given doxy when they thought I had Lymes disease. By day 2 on this medicine my joints and muscles were screaming and by day 4 I was crippled. I could barely walk and the pain that raged through my body was just horrible.

I did post about this but is was shortly after I joined the forum almost a year ago. I will never take doxy again after what my experience was while on this drug.

I hope your doing better now.:wink2::wink2::wink2::wink2::wink2:

 

[donna kosk]

thanks for all your coments surely as helped un like the docs cant beleive how quick problems started with the doxy ive been on plaquin i think thats it but again mad me really ill had to go to casulty not havin much luck with meds gettin side efeact with all meds sick of beenin ill tabs are spos to help but not in my case but thanks again



loopy lupus how needs it

 

[marymackay]

Tablets

Hi Donna, I'm like the others, can't take penicillin or any sulfa tablets, and others. I had to tell the GP doxycycline didn't help my severe sinus at all, so went off it. I realised something was wrong, checked BP with friend's meter and it was high -from sulfa?, so bought my own, still up and down now- labile, no doctor had checked it for years. I am also very sensitive to light/sun/lights etc, and doxycycline mentions that.

Sinus is still terrible, but renal specialist lately found a tablet for the many years of kidney haemmateuria, instead of others that never helped.

I even found 2 years ago that my Super B Forte had sulfa, and found that Super B Complex does not. So hope you will find a compatible tablet.
Marymackay

 

[donna kosk]

well went to my gp and sed thyat should not have been given the doxycycline and she reduced my pred to 5mg from 15mg and said it was my ostio coursin my pain (refered pain)so now im even more lost screamin in frustration not a clue how to beleive any more might just sack all the lot tabs docs consult whats the point i thought once i was dx in january i could try to sort things out but no i ended up cryin and the doc said i understand//////// no way can they understand when they dont have the pain burnin and disabilty patranizin thats what they are.I so so sorry for soundin angry but i am with flippin docs



so just thought i would let you no wot went on im at the end of my tether

 

[Katharine]

Oh dear Donna

That doesn't sound good at all. You say that the GP reduced your pred? I'm not saying that she was wrong to do so but how long have you been on it (and at that 15mg dose)?

Did she have any suggestions for the pleurisy? Is is caused by infection or not?

Katharine

 

[Clare.T]

Donna


This sure sounds very unsatisfactory. And why not give you more effective pain meds for the 'osteoarthritis'

I am puzzled by her reducing the pred too since it is the treatment for lupus related pleurisy. Are you saying you had to stop the Plaquenil and are you on no disease modifying meds these days?

I urge you to seek a referral to the lupus specialists in Manchester. There are medicines that can help if the Plaquenil really isn't suitable for you. Prednisone isn't suitable as a single long term medicine. I hope you can get relief soon


Hugs
Clare

 

[donna kosk]

she is sayin its not pleurisy refered pain is wot it is so i dont no been on 15mg 3/4weeks just sick of beenin told 1thing then been told something else of another doc


really dont no who to beleive

 

[donna kosk]

AE stopped mi plaquenil nd i was never put on anything else just pred ive been on preds since january my gp sed 2day take paracetamol for the pain but im eatin paracetamol like toffees nd takin codine to they didnt replace the plaquenil with any thing

 

[Katharine]

Donna, I can only agree with Clare here. I have heard from several people here on the forum that there is an excellent centre in Manchester. Making an appointment there would be very valuable and I would say also quite urgent.

I would also look into the possibility of changing GP.

Your "treatment" is very far from what I would describe as correct treatment and you need to change that.

Katharine

 

[lazylegs]

Hi Donna,

Whatever you do, do not just immediately discontinue any drugs you are on. Depending how long you have been on them their could be serious repercussions by doing so. I strongly suggest you contact your rheumy to see if you can get your appointment moved up.

Take care,
Lazylegs

 

[donna kosk]

been on steroids since january no breaks but cant take no more i was better without dx nd tabs just fed up with docs


mayb 2morrow i may feel better i dont no but thnx to u all

 

[onetay]

Donna,
It sounds like you are in a lot of pain I do hope that your gp can help you out in that area and get you feeling much better soon. Did the doctor that gave you the medicine know you had lupus? If he did than I think I would be talking to someone that runs that department before he really hurts someone. It is only a thought. Feel better soon.

 

[keebler]

Donna,
It takes awhile for the meds to start working, and also for the docs to find the right mix of meds that work good for us. Everyone is different and respond to meds differently.

What works for one person might not work for another.
I think patience is one of the hardest things we have to deal with. Waiting to see doctors, for meds to work.

Hang in there!
Lyn

 

[donna kosk]

thank you for all your support feelin more carm 2day but still in pain im a bit more rashational i think so will go to see reuny next month but not holdin my breath about the out come so again thank you all

 

[Joandublin]

Hi Donna

It was nice to catch you in chat last night and Im glad you are feeling a bit calmer today. If I can offer you some advice for your Rheumy visit...when you go into the consultation the usual 'greeting' is something like 'well, how are you'. Instead of saying 'grand', terrible, crap, etc or whatever the first thing that usually comes to ones lips , take a deep breath and say something like: 'Im really glad to be here today because I have a few very important questions to ask and I want to hear from you what are my best treatment options'.

The other option is to say 'I hope you dont mind but I have taken the liberty of preparing as well as I could for this consultation and I have a few questions/issues written down here which I hope we can get through'

It doesnt have to be exactly those kind of words but the point I am trying to make is that its important that you take control of the conversation from the get go. Otherwise you may find yourself on the back foot, not explaining yourself well and worse still, come out feeling that you were but not getting heard. There is nothing more frustrating than that.

Before you leave, check that you have all your questions answered. If you are suffering from bad pain then explain how the pain is affecting you. Dont say 'Im in terrible pain all over'. That doesnt really mean much and is hard to know how to treat. If its joint pain, then tell him which joints are worse, how bad they are on a scale of 1-10, how often you are in pain, etc. Also ask him directly if your episodes of pleurisy could be Lupus related and if so what is the best treatment for that.

Im just trying to give you a few tips to prepare for the Rheumy visit and make the most of it. It takes a lot of practice to get it right. Im attending my Rheumy now since early 2005 and I still come out saying 'drat' I should have said this or that! But I am getting better at it

Dont forget to tell him about your on call doctor prescribing you doxycycline and the effect it had on you. Ask him if there is anything else you should know about your condition to help you avoid flare ups, etc. Try and get as much conversation going between the two of you. It will help develop the kind of relationship you need with your Rheumy.

If, at the end of all that, he is still being uncommunicative then I think its time to seek another referral.

Best of luck!
Joan:rose: