HYDROXY WILL WORK?

[Lupyknit]

In my 6th month of taking hydroxy, which my rheumy said will be helping by now. Ermm .... still waiting. The pain in my left hip has now spread across the base of my spine to the right hip. My very sympathetic GP has upped the pain relief to 20 mcg Bu Trans but I still need co-codamol top ups. He's chasing the hospital, and I went for more x rays to see if anything shows. I can more or less cope with the Reynauds, don't seem to get as exhausted as many on here, but the pain is very limiting. Steroids are out of the question and I'd be terrified to try as I'm bi polar. Apart from being extremely grateful for an excellent GP, what else can I do? 

[noonoo52]

Hi Lupyknit, my hip paid is tendonitis and I had an MRI scan which showed it in both hips but worse in the right one. I have had two injections in the right and one in the left of a Intra-Articular/Intramuscular Injection it is a Corticosteroids so not sure if you can use this, it was injected under guided ultrasound by a doctor at the hospital. It only lasted three months and I was to,d can only be done three times in each hip.

I am in a lot of pain at the moment and can't see any end in sight, I see a healer once a week which helps. I have been told that the operation to repair the tendons in this area are not that successful but not sure if I can continue in this pain it is painful at night to sleep I toss and turn  a soon as it gets painful, ok if you can sleep on your back, I was told to sleep with a pillow between my legs which does take the stretch off so relieves some of the discomfort at night. Standing for too long also is an issue so I just take a rest for 30 minutes at a time which helps. 

Not sure if they will see this type of damage on an X-ray but if not answers there ask the consultant for an MRI scan but ask for some relaxing meds as I did as I had to pull out of first scan due to claustrophobia, I think it was Diazapam, would not like to take that again felt really weird like I wasn't in control.

Let us know how you go and what they say, would be very interested.

Take care, love noonoox

[Lupyknit in reply to noonoo52]

Thank you noonoo. It's helpful to know of someone in a similar state. I'll certainly ask about the possibility of injections helping. Really can't take much more of this x

[HazelW]

I was on Hydroxy at the start but it did absolutely nothing for any of my symptoms so they changed me to Methotrexate - wouldn't be without it now! At one stage I was in agony, put up with the pain for weeks, thinking it was down to the Lupus so nothing to be done about it. Mentioned it on my next visit to the consultant & it turned out to be nothing to do with Lupus - a scan showed two displaced discs in my spine. My consultant's words have stuck with me - "Don't blame everything on Lupus!! " I now do stretching exercises every morning and the pain is much less severe. 

[Roanna]

I too struggle from back and hip pain but I do find if I keep up on stretches it improves.  I've been lying around the last 3 months due to bunion surgery and a hysterectomy and am really out of wack now.  I've started to see a physio therapist to help with walking again as I think the surgeries caused a lupus flare and  things have been healing slow.  My tailbone always hurts and my hips seem out of wack but physio seems to be helping strengthen those areas. 

good luck 

[trixabelle_]

I know the feeling. I started Hydroxy last November - saw my Rheumy in February and told him I feel the same. My next step would be Methotrexate but I think it's finally taking affect which I'm glad as I researched methotrexate and it sounds like an awful med. I'd say keep persevering with the hydroxy, I know it's tough xx

[Wendy39]

Hello. Some of my skin problems cleared up within the first month of taking hydroxychloroquine but to be honest it was a year before I felt the full effects. Looking back now, I think the consultant (and maybe me too) had underestimated how low I had sunk and the impact of my symptoms. I didn't have internal organ involvement but I had plenty of other symptoms which were effecting me daily. I wish I had been more forceful and asked if there was anything else we could have looked at to help me back on my feet. But hindsight is a wonderful thing. 2 years 4 months on and I am still just on hydroxychloroquine and I do not think my lupus is as under control as it could be, I have daily problems. But then it seems that that is how life is for most lupies, unless you go into full remission. Anyway, stick with it. But keep a record or diary of your ongoing problems, so you have specific info for your specialist when you are reviewed. Best wishes. 

[Lupyknit]

Thank you Wendy, and other responders. This has given me so much help, advice, and things to think about. Gold stars! 

[Paul_Howard Partner LUPUS UK]

Hi Lupyknit,

Do you know if you are on the highest dose of hydroxychloroquine for your weight? Do you have an appointment with your consultant anytime soon? Perhaps you can discuss any treatment options with them then?

[Lupyknit]

I'm on 200 mg of hydroxy Paul, which I assume is right because my BMI is 17 ( lots of GI problems pre- rheumy consult, which is why I'm so underweight) My GP is actively chasing my consultant to see me soon. The BuTrans has been helping more the last couple of days, but I'm having to be careful to take things gently. Blood tests tomorrow at GP's to check out whether anything shows up - the first bloods the rheumy took showed a severe D3 deficiency, which I now know can cause bone and joint pain.

[Paul_Howard Partner LUPUS UK in reply to Lupyknit]

Good luck with your GP appointment tomorrow. Let us know how you get on. If you are deficient in D3, hopefully you can get a supplement and you may notice an improvement in some symptoms.

[Lupyknit]

Just a quick update. I went for my blood tests - will probably get the results next week. Because the pain has been a little better, I decided to walk back from GPs. I generally do a very short walk with my dog each day, but that involves stopping for sniffing (him)! I was rather desperate for a non stop stretch legs walk. Not good. The poor hound was desperate for his round the block, and now I'm a square one. Not a happy bunny!