my weekend experience

[Marijo1951]

You were very helpful last week when I wrote about the effects of reducing from 25mg to 20mg. I decided to go back to 25mg which led to a big reduction in pain. Then late on Friday I started to get a lot of GCA type pain all around my skull and temples, something I hadn't experienced since starting steroids. I let it go til Sunday, then rang 111 who said, in view of the remote risk of blindness, I should go to A&E. I did so, saw one of the Royal Free's wonderful young doctors who rang an ophthalmologist for advice and gave me a battery of eye tests, which were very reassuring. The doctor also got advice from a consultant rheumy who said to up the steroids to 40mg immediately. I went back Monday morning when they confirmed I must stay on 40mg for 3 months and they're bringing forward my 11th December rheumy appointment.

One thing that worries me is that I was told that my recent DEXA scan shows that I have osteoporosis, so the doctor on Monday was very insistent that I must take Alendronic Acid, probably for 5 years. I was prescribed this on 31st July when I was first diagnosed and I did take it for a month. However I was dubious and all I've read since really puts me off. I didn't renew the first prescription. I have now reluctantly agreed to start it again but really have doubts. I have problems from time to time with food getting stuck in my oesophagus, but have never been to a doctor about it as it didn't seem too bad. I've made an appointment with my GP for Thursday next week so I can ask him for advice to weigh up the relative risks, but I'd welcome any helpful contributions from all of you. I know at heart I'm just a coward - can't bear the thought of a barium swallow or an endoscopy - but I also know this is ridiculous.

[jinasc]

Go to the National Osteoporosis Society site and read up on all the options - then you can decide which one you want and it does not have to be AA.

[Marijo1951 in reply to jinasc]

Thanks very much. I'll take a look today.

[CT-5012]

Hi Marijo1951 you're not a coward, we all worry about the unknown, barium etc, I did but I wouldn't if I had to do them again. As for AA discuss with your docs, find out your bone density the aunties will be here later with lots of information about that. You appear to have had excellent treatment so far though I wouldn't have said that the risk of blindness with GCA was remote! All good wishes. 🙂

[Marijo1951 in reply to CT-5012]

Yes, nobody could fault my treatment, and I'm always so amazed at how nice everybody is at the hospital despite the pressure they're under. It's the NHS at its finest, the ideal we want it to be all the time - if only...

I think the doctor on the 111 line said 'remote possibility' because she didn't want me to panic.

I just want to make the best possible informed decision, so I'm grateful for all advice.

[Freddie01]

Hi Marijo1951 like you I had the DEXA scan last year and it showed I have osteoporosis. I was given to option of having IV Zoledronate which lasts for 12 months my next one due in December. I opted for this rather that taking more tables daily

[Marijo1951 in reply to Freddie01]

Thank you very much for this information. I didn't even know that this option existed. It certainly sounds better than putting regular wear and tear on a damaged oesophagus, and I'll definitely discuss it with my GP next week.

[PMRpro Ambassador in reply to Marijo1951]

If you have swallowing problems, even reflux, you shouldn't take AA. Do discuss it with your doctor.

[Marijo1951 in reply to PMRpro]

I used to have acid reflux badly but it went away like magic when I completely gave up drinking coffee. I now have it only occasionally. I'll mention it the doctor.

[Freddie01]

You are very welcome.

[Marijo1951 in reply to Freddie01]

Hello Freddie01. Can I ask a rather cheeky question please? I'm just wondering if you got the IV Zoledronate on the NHS or paid for it privately. I'm asking because there seem to be a lot of indications online that cost is one of the main factors in what's available.

[Freddie01 in reply to Marijo1951]

Hi It was given via the NHS my consultant did offer tablets I pulled a face and said I would be rattling soon so she suggested the IV which was painless and only took an hour in total

[Marijo1951 in reply to Freddie01]

Thank you. Good to know.

[Rugger]

I was diagnosed with osteoporosis in January this year and started on Risedronate, once a week. So Thursday mornings see me sitting bolt upright at the computer for 30 minutes, reading the latest news feed on the forum! I get my breakfast on the 31st minute!

I prefer the idea on 52 small doses a year, rather than all in one go! See what your doctor has to say next week.

I had an endoscopy a few years ago and imagined I would be like a headless chicken, fighting the doctor and nurses. To my relief and much to my surprise, I was fine! I had the back of my throat sprayed with local anaesthetic and didn't feel it going down. The nurses were reassuring and I recited my favourite poems in my head and it was over. Not having had sedation, I could go home straight away. As you say, the NHS at its finest.

As CT-5012 says, it's the fear of the unknown - also the fear of being out of control, which is natural.

[Marijo1951 in reply to Rugger]

You make a good point that it might be better to have weekly small doses rather than one huge one. Thank you for telling me about your endoscopy - it's very reassuring.

[Longtimer in reply to Marijo1951]

I have twice had the endoscopy with throat spray....it`s fine,....no problem...

[Marijo1951 in reply to Longtimer]

Thank you. I'm becoming reconciled to the idea. A friend was describing hers yesterday and saying it's nothing to be scared of. I just never like the idea of being 'messed around', but I'm sensible enough to get over it when necessary.

[Hindags]

Was this your first ever Dexa? Reading Dexa scans is an art. If even a slight deviation exists between area of bone sampled, it can make things look like they are deteriorating more than they are. I consulted with the physician who worked the original research on alendronic acid. He reread my Dexa scans and said that because I'd been stable for two years, doing nothing but calcium and D, he would NOT Rx the drug. But, adding Prednisone to the mix tipped the balance toward recommending Alendronic Acid. That convinced me. I was and continue to be very reluctant. But from what I've read the average % bone loss is greater in the first months of Pred than later on.

I have osteoporosis, and esophageal problems. I cried before taking my first dose of Alendronic Acid. I resisted the "poison" for so long. I started last January, taking it weekly, so I could stop quickly if I wanted to. I have had no side effects since the first two doses when I felt esophageal irritation. If you choose to take it, I'll tell you what helped me adjust.

I've talked my prescribing doctor into a new DEXA scan in Dec. My one year anniversary on Pred and Fosamax.

I am now trying to research whether at this stage of my Pred usage I have the same risk of bone loss as I would have been when I first went on.

But here is the conundrum. If my scan shows my bones to be stable does that mean the Alendronic Acid is working? If my bones are worse what does that say? I guess I have some things to learn.

[Marijo1951 in reply to Hindags]

It was my first DEXA. I've been so lucky with my health up to this year and never felt any need to have my bones checked out. My best friend (66 like me) had her first DEXA when she was 45 and has had them regularly since.

I must admit that I felt no after effects when I took those few doses of AA, but all the warnings about it, plus a couple of horror stories I've heard, really put me off putting any more into my body. I'm impressed that you have oesophagal problems and yet take AA. It clearly helps when deciding what to do, to be very well informed about the level of one's bone loss.

[Rugger in reply to Marijo1951]

From my understanding, but someone may correct me, the AA or other bisphosphonate drugs will only affect the oesophagus if we bend down while it's still in our stomach and so the acid could wash back up into the oesophagus. The instructions are to take it with a full glass of water (to wash it down) and to remain upright for 30 minutes, to prevent the backwash. Once the tablet has left the stomach, the coast is clear! Breakfast then pushes it further onwards! That's my visualisation, anyway.

I was reluctant and also cried, but felt I had no choice. I shall stop it as soon as I'm off pred!

[PMRpro Ambassador in reply to Rugger]

I don't think it is quite as straightforward as that, though bending will exaccerbate any problems. People with any swallowing problems are at a greater risk.

[Marijo1951 in reply to PMRpro]

I stood like a telegraph pole while taking it and for half an hour afterwards, and then immediately ate breakfast.

[Hindags in reply to PMRpro]

I have a hiatal hernia so it is easy for acid from the stomach to float up. I sit upright and am quite still after taking Alendronic Acid. I also sleep on more pillows than I usually do for the first few nights if I feel any irritation. The first time I took it, before finding that this system would work for me, I had very painful esophageal spasms. Second time much less. Also, I think that the weight I lost on the low carb diet has probably helped a bit.

[Marijo1951 in reply to Hindags]

Thank you for responding. It's reassuring that you can take the AA despite your problems as long as you take special care You've raised another of my concerns - my weight. I'm not obese but certainly rather overweight, and the incredible appetite I have while on steroids isn't helping. I'm going to have to apply some self discipline in this regard.

[Hindags in reply to Marijo1951]

Believe me when I say I expected to have zero or minus zero discipline when I was imagining cutting out bread and grains in order to lower carbs. Not to mention sugars as well. But I felt desperate enough to try it. It helped that the Pred made me a bit nauseous initially, so it put me off of food for a bit.

I was actually quite surprised that after a short time, a week or two at most, bread and carb filled snacks no longer had the same hold over me. I also noticed that I only experienced strong carb cravings after indulging in carbs or sweets, so the more I stayed away from them the easier it was to stay away. I steadily began losing weight despite the Pred. 25pounds in about 4 months. It is quite stable too unless I go way overboard.

I have also found that if I "have to" cheat on the carbs, having them later in the evening, before going to bed, makes it easier to fend off the carb/sugar generated cravings. I think that that is because I sleep through the time that I'd be hit by rebound cravings. This is pretty convenient since I take Delayed Release Pred. at 10pm and I'm supposed to have a snack at that time. I have a piece of Trader Joe's gluten free seed bread (really I high fiber cracker bread and pretty low carb) with peanut butter and a wedge of laughing cow light cheese. Yummy reward for being disciplined and putting up with another challenging day of PMR.

[Marijo1951 in reply to Hindags]

Thanks for this further reply which I'm reading early morning just after getting up (in London, UK). It's spooky how what you say chimes with me. Last night I had to get up to eat something ( 2 slices of cheese on toast). This is certainly not for the first time and I usually have toast or a bowl of cereal. I've already been thinking that it would make sense to try to eat slightly later and possibly plan to have a late-ish snack every night. I normally have dinner at 6-7 pm, then nothing til morning. Or, since I take my pred in the morning, maybe I should experiment with having a bigger breakfast. Probably the most important thing is to reduce the carbs. That's also going to be the most difficult, especially since I have a halogen oven which makes the best baked potatoes. I bought it earlier this year when my PMR made it impossible for me to get down to open the oven door and it's proved invaluable.

[MaryA_]

Look at it this way: Barium swallow. Or BE. I’ll take the swallow thank you!

[Marijo1951 in reply to MaryA_]

Yes, best stay positive... I think I'm finally accepting that I must have my oesophagus checked out, something I should have done already.

[Hindags in reply to Marijo1951]

I have had many endoscopies. Usually under very light sedation. Much less problematical for me than the whole colonoscopy routine one goes through periodically at my age. Five years can feel like a very short time between events when those events are colonoscopy preparations. lol