Any help please I’m desperate

[Jude62]

Diagnosed with PMR for a year, eyesight getting fizzy but told have not got GCA. Just started alrndronic acid and my previous knee problems of OA has intensified so much and can now hardly walk. Knee very swollen with pains up to my groin and back down to foot.. Am on 10 mg pred and struggle lowering this for my PMR. Please any advice support welcomed

Jude 62

[SheffieldJane]

Hello Jude62. I am so sorry that you are going through a truly horrible time at the moment. If I were you I wouldn't be contemplating reducing my Prednisalone dose while I felt so bad. You need to return to your prescribing doctor as a matter of urgency to let them know that your symptoms have intensified. It would be helpful if you could be sent for a DEXA ( bone density) scan too, although I sincerely hope that you've had one already and that is why they have prescribed AA.

I experience blurry vision and have an overall slight deterioration of my eyesight. I think it is another downside of Pred. A thorough eye examination is advisable. We need to be very careful of our eyes as you know. We can never say we are safely out of the woods as far as GCA is concerned. A high proportion of PMR sufferers go on to develop GCA as you probably know already.

Let us know what happens about this. Wishing you all the best. Jane

[Jude62 in reply to SheffieldJane]

Thank you for this. I had a dexa scan last month which resuled in being put on AA . Just seen a locum who thinks it may may be a gout thing!!! Definitely fluid on the knee. And told to take naproxen and avoid purine . And to get eyes tested again even though they were done 6 months ago. Don’t you just love this condition

[SheffieldJane in reply to Jude62]

This condition is a full time job. My friends wonder why I have no time for them!

Did the doctor talk you through your DEXA scan results? As PMRPro says I am afraid that the AA could be the culprit. Some people simply cannot get along with it.

I think an eye exam every 6 months is not excessive, I've got a feeling that the dear old NHS used to treat us to that.

Gout - golly! Do you think it fits your symptoms?

[PMRpro Ambassador in reply to Jude62]

If it is gout then naproxen won't do a lot - and if you are on pred you shouldn't be on naproxen as well.

However - AA isn't the only stuff and if it is causing problems you can change. In my book when symptoms appear soon after a change in medication - blame the medicaiton until proven otherwise.

[Telian in reply to Jude62]

Are you getting the eyes tested via high street? if so I would ask your GP to refer you to eye dept at your local hospital, they will check if the disease is affecting your eyes as opposed to general deterioration as we get older.

I've just gone through this and vision express told me my eyes had deteriorated so much since last time that I needed three new lenses, distance, which I've never needed until now? computer and reading.

I wasn't convinced and got referred to the hospital, they said my eyes hadn't changed since last visit over 2year ago! (used to get regular call backs when first diagnosed but the money ran short so only seen if referred now). He will see me in 4 months to see if they've settled and then consider operating on the right cataract - which he doesn't think looks bad enough but listens to what I'm experiencing with my sight - a good consultation I thought. Cheaper than three pairs of glasses which I don't apparently need!

[PMRpro Ambassador]

Not much to add to SJ's post - but you really need to get that knee looked at properly and not just put it down to "just OA" - even if the GP also tries to do so. It could be all sorts of things and that needs sorting out.

Muscle, joint and back pain and bone pain are all possible side effects of the alendronic acid - and if the deterioration in your knee has happened since you started it I would tell your GP very politely you would like to try stopping it to see if it helps the pains. It may take a few weeks. In the meantime - have you had a dexascan? Do you really need the AA?

[Jude62 in reply to PMRpro]

That’s my issue I’m not convinced I need AA. GP and consultation say yes- but they’ve nothing to compare as I’ve been on steroids a year. Only had 2 does - may give it another week.

My knee is another issue but NoOnewilltake me seriously that there’s a lot going on pre. post and trans patella. Thank you for your support 🙋🏼

[Insight329 in reply to Jude62]

Regarding AA: My Rheumy also prescribed AA (Fosomax). I asked for the results of my DEXA scan. I then researched what they meant and disputed the need for the drug due to the results. I also suggested an alternative more natural treatment plan for bone health.

Fortunately, my doc agreed with me and has given me permission to stop AA and try the COMB plan (Combination of Micro-nutrients for Bone Study).

Find out the results of your DEXA scan. That's important. Then go from there.

I used these 3 articles to understand my results and then to plead my case:

rheumatology.org/Portals/0/...

nof.org/news/new-wall-stree...

hindawi.com/journals/jeph/2...

Can't comment on your knees other than "OUCH - that sounds painful. Hope you get some answers on them soon!"

Best wishes.

[PMRpro Ambassador in reply to Insight329]

Why not post this as a new thread?

[PMR2011 in reply to Insight329]

Sorry you are going through this. Knees are important! Word of caution, I too started the COMB study supplements. One month later I was diagnosed with a Deep Vein Thrombosis and am now on a blood thinner. Being very active I wanted to figure out why. I found 2 things which increased my risk. Being in the first year of GCA and Strontium! So I immediately stopped the strontium and interestingly enough felt much better after. Supplements are not benign too. Hope you figure this out soon.

[Hidden]

I had terrible pain on AA in hip and groin. Nothing more to add than what sj and PP have said. Wishing you luck!🌻