Anti inflammatory medication? ?

[linz84]

Hi, I would be really grateful for some advice about anti inflamatory I've been taking naproxen for around two months which I started during a big flare up. I've recently had a review at the gp and have been told I can only be on them for two month bursts due to the effect on your heart kidneys and stomach. I stopped taking them yesterday and I can already feel the pain in my feet ankles and hands building up again I've only just returned to work from 6 weeks sick leave due to my flare and now I'm getting worried I'm going to go down hill again. I feel like I'm being left I'm limbo at the moment haven't actually got a formal diagnosis but 'connective tissue disease ' 

I have done some research and ordered some tumeric to try I'm really hoping they work as don't know what to do now. 

I am under the rheumatologist and have also been taking hydrohydroxychloroquine for two years and had a depo medrone injection at the begging of Feb. Just feel people who are actually living with these problems are more informed than the actual consultant/doctors loosing faith in them

Thank you for taking the time to read my moaning haha 

[HazelW]

I've been advised to cut back on anti-inflammatory's too. Was taking Arcoxia daily now just take it twice a week. On the two days I take it the pain is practically non-existent. It does return during the week between doses but not as bad as it used to be. Have decided the pain is a better bet than damage to my heart! 

[linz84 in reply to HazelW]

Thank you for the reply! I haven't been given any option to take them only a couple of days a week will go back and ask about doing that. Feel awful today feel like I finally start feeling half human again and then they take it away from me and don't give any alternative treatment to help I know we've all got enough problems without having damaged hearts too  

[dwsmith]

My husband was on high dose painkillers and anti inflammatories for 20 odd years,  for his cracked spine - excruciating pain.  He now only takes Turmeric - the brand is Good Heath Naturally Nutrition  Professional strength  - Curcummin x 4000  - thats all the details on the bottle, £34 for 180 tabs, from health shop or online from well known store, he feels like a new man too.

The nutritionist said these were the Rolls Royce of anti inflammatory - hope this helps x

[Paul_Howard Partner LUPUS UK in reply to dwsmith]

Please be aware that whilst some people may benefit from turmeric, lupus is a very varied condition so in others it may not help or it could potentially be harmful.

Turmeric can possibly have a number of side effects or interactions which may be relevant to people with lupus. You can read more about these at webmd.com/vitamins-suppleme...

[EOLHPC]

Hello Linz.  I'm sorry to think of you managing this with only steroid injections, hydroxy & NSAIDs.  After 2 years of monitoring, I'd hope your medics would feel clear enough on the characteristics of your version of this type of systemic condition to be more confidently proactive about trying other antiinflammatory treatments in your therapeutic plan

Have you discussed alternative anti inflammation treatment e.g. oral prednisolone...even a relatively low dose taper might be worth a try, eg 10mg tapering off over 4 weeks by .2.5mg per week.  

My gut instinct is that your GP & rheumy may not have enough specific experience of immune dysfunction & connective tissue disorders to be capable of designing you a bespoke combined therapy treatment plan.    

My suspicion is that you may eventually fare better being treated by a clinic with specific expertise in our type of disorders, eg a dedicated lupus clinic often takes on connective tissue disease patients

Wishing you all the best with this...hope you'll let us know how you get on

🍀🍀🍀🍀 coco

[linz84]

Thank you for the replies i really appreciate your advice.

Hi Dwsmith -How long did it take for your husband to start noticing the turmeric working?? I'm really glad they've worked for him fingers crossed I'll get the same effect. Xx 

Hi barnclown- I am starting to get really frustrated with it all now and have recently been put on a 12 monthly review instead of my usual 6 months at the rheumatology clinic I have got the option of speaking to the rheumatology nurses which I have done on loads of occasions during my flare up (it got a bit embarrassing in the end and I give up ringing them) but don't feel it's the same as seeing the rheumatologist face to face.

My gut feeling is that I've got lupus to be honest I've got random rashes and rashes caused by fluorescent lights (also if I go somewhere where there's fluorescent lighting I feel like the energy I've got gets drained out of me) also had rashes from the sun, joint pain mainly ankles knees and hands, hot swollen finger joints (little finger is now bent and deformed since my last flare) hair loss, severe fatigue, breathlessness, pain when breathing, strange fevers, I'll just randomly fall over, plus loads more weird and wonderful symptoms.... And family history of lupus.

I will ring up the rheumatology clinic on Monday and try to discuss with them about alternative anti inflammatory treatment.

How do you find clinics with expertise in our type of disorders?? Xx 

[EOLHPC in reply to linz84]

I vvvvvv much like the way you're thinking!  Go for it!  Am looking forward to your updates!  

If you message Paul Howard at Lupus UK ( he replied to you above) he can help you find rheumatology clinics with connective tissue/immune dysfunction expertise  nearest to you

🍀🍀🍀🍀