Almost 4 months since GCA diagnosis and can't get my shoes on for swollen ankles.

[strawclutching]

Hello again folks. Just a bit concerned over the holiday period, as my ankles and blood pressure (156/88 this morning) have gradually got worse and I'm worried about kidney disease. Can't get my shoes on any more. Especially the right one! I've been on insulin for 40years, so was put on Lisinopril as a safeguard against diabetic kidney disease about 15 years ago. I was fine on 20mgs until I started the Prednisolone and the high doses of Omeprazole (40mgs twice a day). I have next to no salt, no sugar, nothing acidic as I suffer from acid reflux and only drink water. My blood pressure and palpitations started with the steroids, but my doctors haven't changed anything. I'm down from 40mgs Prednisolone ( October ) to 17 and1/2mgs. now. I've read that Prednisolone is counter reactive to Lisinopril and alters its strength so I wonder why my GP has not spotted that. Actually, I'm not really surprised as they didn't have a clue about GCA and sent me away several times to nurse myself with paracetamol.

Also, because of my acid reflux problems, I've been unable to take calcium supplements, although I'm ok with oil based vitamin D. If I'm calcium deficient, can this affect my blood pressure and kidney function? My urine pongs a bit too, although I've just finished a seven day course of Nitrofurantoin 3 weeks ago for a UTI - I tend to get these when my immune system drops, so will be expecting them more often while I have to take all these meds. Sorry for the long post, but I'm on my own and my daughter hears my tale of woe every time she phones.

[PMRpro Ambassador]

That's about the right time for that UTI to recur because that was either not enough or not the ideal antibiotic for the bacteria involved.

I think you need to get the GP to check your bloods - should be done every few months anyway, more often if you have any problems. That would answer a few of the questions. Pred CAN reduce the effect of Lisinopril so the GP should be checking your BP - but does he KNOW of the interaction? A lot don't think about interactions which I and my husband know to our cost.

Someone else on the forum has had swollen feet and ankles - which has resolved with increasing her pred - and all the other niggles have gone too! Her rheumy, a particularly good one, is mystified.

[strawclutching in reply to PMRpro]

Thanks so much for the quick reply PMRpro. I always have to ask for blood tests - the GP hasn't set up a plan to include them which seems bonkers. And as you say I doubt he's aware of the interaction between the Pred and Lisinopril. The UTI appointment was done by telephone with the practice nurse, which always happens for UTI's and especially since Covid as they don't want to see anyone face to face. Usually Nitrofurantoin does the job, and I've never had swollen feet with a UTI before, so I'm not convinced that's the problem. I'll ring the GP in the morning, and if there's no joy, I'll try my rheumy nurse if they're answering the phone. The other thing I was thinking, was I've been using Gaviscon a lot this last 6 weeks which has quite a bit of sodium this and that in it, so I haven't had any for the last 2 days to see if that makes a difference.

[PMRpro Ambassador in reply to strawclutching]

I did have trouble with puffy feet whenever I ate out more than a couple of times - I'm obviously very sensitive to salt.

[strawclutching in reply to PMRpro]

My GP surgery is closed again today. Recorded message says to ring 111 in case of emergency. This must be a holiday in lieu of Boxing Day, which fell on Saturday. Just my luck.

[PMRpro Ambassador in reply to strawclutching]

I think it is disgusting - 4 days without a duty GP shouldn't be allowed. Here in Italy my GP worked Christmas Eve as normal and was duty doc on the 25th and 26th. Her paired practice GP covers us for this week - with access to all our notes via computer. They will swop for next week. Then New Year 2 other local doctors do the cover for a day each. There is only one day that a doctor I don't know will be at the other end of a phone (and would come to house if needed) - and that is only because he is new, arrived in the last few months. Mind you - I would have to be desperate to try to see her next week!!

[strawclutching in reply to PMRpro]

You are so lucky. Rheumatology aren't at work either. No-one answering the phones. Our NHS has gone to pot.

[PMRpro Ambassador in reply to strawclutching]

I'm staying here ...

[Linlang]

So sorry to hear you are suffering.My journey with pmr resulted in ankles like tree- trunks which stayed till a vascular man finally said let’s look at your meds! ( took 1 yr !) I came off the culprit drug felodipine given for raised blood pressure due to steroids and almost immediately swelling disappeared. Doctors generally in my opinion don’t consider drug reactions!Good luck- I remember how painful my ankles were- wore boots for almost the entire year.

[Linlang in reply to Linlang]

I’ve been on lisinopril for 20yrs and no trouble since taking predisolone.

[strawclutching in reply to Linlang]

Thanks Linlang. Can't get boots on either. May have to buy wellies.

[Lindalang in reply to strawclutching]

Ugh boots lots very reduced.

[herdysheep in reply to strawclutching]

Wellies are dreadful things to wear for any length of time and difficult to fit with swellings without causing blisters if loose on the foot! So says an ex lambing time bod who had to wear wellies 15 hours a day. Have you tried lower slung softer footwear? Hope you get a helpful medic appt soon.

[strawclutching in reply to herdysheep]

Thanks herdysheep. I didn't need much persuasion against wellies. Horrible things. I'm not intending to go out unless necessary, and it's too icy underfoot at the moment. Don't want to risk a broken leg or worse. Could try my sandals, or Flip flops might do it!

[herdysheep in reply to strawclutching]

Flip flops dodgy in terms of falls etc. PMRpro suggestion sounds good.

[PMRpro Ambassador in reply to herdysheep]

OK until it rains! I wear sandals until the end of November here and from early March - with thick socks. My neighbours think I'm daft!

[PMRpro Ambassador in reply to strawclutching]

Not wellies - too hard. When I had swollen feet it was norwegian socks and Birkenstocks!

[strawclutching in reply to PMRpro]

Blimey, I need a whole new foot wardrobe.

[herdysheep in reply to strawclutching]

😂

[brambles22]

'Also, because of my acid reflux problems' I was prescribed with Omeprazole which is good for acid reflux

[strawclutching in reply to brambles22]

I'm already on the maximum dose of Omeprazole. Can't wait to get off all these drugs, and I suspect Omeprazole will be the most difficult to wean off from.

[Raewynne]

Omeprazole is very difficult to wean off.It was definitely the peddle to the metal when I came off it last time.Had to have everything all alkaline for quite a while.!

[Raewynne]

I have had continual swollen ankles since bring on prednisolone.Dr not too concerned about it.I just have to put them up.

[strawclutching in reply to Raewynne]

How is your blood pressure though? There are warnings all over the internet about both conditions being linked to kidney disease. Just to pick your brains a bit more - sorry. Did the alkaline diet stop the reflux, even without the help of the Omeprazole? Or was it a gradual adjustment? I'm on a virtually alkaline diet now, and just beginning to heal the inflammation after several weeks even though I'm still taking maximum dose Omeprazole. The thought of that pain and the sleeplessness returning terrifies me.

[Raewynne in reply to strawclutching]

Yes persisting with the alkaline eventually got me off the stuff.

Unfortunately I'm on prednisolone again now and my indigestion is bad.I don't know that I will reduce completely again.Yes my blood pressure is unstable as are blood sugars etc all due to prednisolone but I am on Meds to control them.Prednisolone has weakened my heart so I do keep an eye on my ankles and tell the Dr regularly.I hope my kidneys are ok.What tests do they do for them?

[Raewynne in reply to Raewynne]

I meant Im on Omeprazole again as I'm on prednisolone again unfortunately as my condition relapsed

[strawclutching in reply to Raewynne]

Sorry to hear you're back where you started. They can test your blood for creatinine and your urine for albumin, which are present in levels that could be indicative of kidney disease. If your clinicians already know about your blood pressure and swollen ankles they should have investigated this? Controlling blood pressure, either by increasing your BP medication or changing it is vital to protect your kidney function. If they haven't investigated this I would give them a good poke.

[GranAmie]

sorry for your probs. If you take a uk size 8 extra wide extra deep shoe i'll post them - bought by mistake, unworn. I added heel grips to try them but no joy so they're in btm of wardrobe PM me if any good; best 2u

[strawclutching in reply to GranAmie]

That's kind Gran Amie, but I'm only a six. I'm hoping fat ankles are only temporary. Just bought 3 pairs of new boots and shoes before this happened.

[GranAmie]

ps i reckon they are prob 9s in real terms x

[Devoid]

Hi are you on medication for your blood pressure? ,My G.P changed my medication and the swelling improved considerably.

[strawclutching in reply to Devoid]

Yes I am, but there are contraindications between Prednisolone and Lisinopril which my GP hasn't noticed, so I reckon I need mine changed too.

[weatherman69]

so using the predisone with lisinopril causes sodium, water retention significantly. I have seen this in my nursing career. You need the predisone, so depending on your heart and blood pressure history, I would ask to be taken off lisinopril. (lisinopril, causes bad cough in some people, so if you have a cough, be sure and mention that, it is a warning sign)

My husband is also diabetic from the predisone use. He is on metoprolol, and imdur. He has stents..... he has some swelling at the end of the day, that resolves from elevation or compression therapy. His dosage on Metoprolol had to go up a bit with the predisone to keep his blood pressure at 120/70s and he seldom goes over 130/80. Metoprolol also helps with pulse. His is always in 60 to 70s range now. Now diet is huge!! we found that food out is really a NO NO for the most part. Most places put salt into everything. We eat Mediterreaan, no can foods at all. If we do eat can foods, we pour off liquid and check the mgs of sodium per serving. Most cans like soup have more then your recommended sodium content for a 24 hour period. So I try real hard not to exceed 450mg per meal for us. We use seasalt if we do put salt on anything. I have learned to cook with spices and leave salt alone. Also excess of animal protein can be hard on your kidneys and cause a increase of swelling too. So important not to over do animal protein per meal. Being kind to kidneys, especially with diabetes is very important. We try really hard not to do more then 1 meal of animaal protein a day. Nuts and beans we use alot. It has made a significant difference in lowering blood pressure over well being. We only eat fish or chicken, and barely eat read meat. If we have red meat is is tacos 1 or 2 a month. I hope this helps.

[weatherman69]

PS. get to a podiatrist too for proper foot measurement and fitting of the right shoes too!! very very important

[strawclutching in reply to weatherman69]

Thanks weatherman69, it's good to hear from a nursing professional. Although I've been ok on Lisinopril for so many years, I have noticed an irritating cough since I had the GCA and PMR, but it's difficult to know what that relates to. I've just phoned my GP's surgery and requested a call back about changing my BP medication. The contraindications between Prednisolone and Lisinopril should have been spotted back in October by a clinician.I've changed my diet a lot over the past few weeks, mainly because of really bad acid reflux. The cough could be related to inflammation in the G.I. tract I'm thinking. I do eat white meat and fish every day with lots of veg, fruit and plain fat free yogurt. I'm just discovering the nasties in tinned soups, aside from the salt. I've been using soya milk, cornflour and dried herbs to make fish and meat sauces, and it's fine without salt. Do you know anything about bacterial overgrowth in the intestines from the slow transit of food related to lack of stomach acids (use of Omeprazole)? Sorry to try and pick your brains further.

[strawclutching in reply to weatherman69]

Well, I've just got off the phone to my GP who says he's never heard of any difficulty using Lisinopril with Prednisolone and many of his patients are one both. He suggested doubling the Lisinopril to 40mgs from 20 but I said I wasn't happy doubling it as it would need to be lowered again when the steroids are lowered. So he said he's increase to 30mgs with a blood test in two weeks. I told him I'd found studies online about using both drugs together and he said he wasn't going to argue with me about that because he knew it was fine. Why do some GP's refuse to think they may be wrong? So frustrating.

[PMRpro Ambassador in reply to strawclutching]

Because you are a mere patient questioning their knowledge. That you are you and others are them rarely crosses their mind ...

[strawclutching in reply to PMRpro]

As soon as I recognised his voice I realised oh yes, this was the GP who insisted 2 years ago I only needed a 3 day course of antibiotics to cure my UTI. I had this particular UTI recurring for four months with three x 3 day courses until a different GP gave me a 7 day course which zapped it straight away.