Prednisone , endoscopy and colonoscopy.

[Nightingales]

Good morning. Some of you may remember me and how the grinch has been following me around for a while. You were all so caring and wonderful when my daughter died and I was flooded out of my home just before Christmas. I was scheduled for spinal fusion surgery and the timing was ideal as we have temporarily relocated to a retirement apartment with food and housekeeping included. But it wasn’t to be. Pre op blood work showed severe unexplained anaemia. Blood work and Fit test were otherwise normal so it’s on to the delightful tests in the two week plan.

I do feel pretty awful, tired, achy, in pain from my back. I did the flare protocol at Christmas but haven’t gone any lower than 10 because of morning aching. I take gastro coated at 2.00 am.

So questions Do you have any recommendations about taking Pred ? I starve for both plus an abdominal ultrasound. Also, has anyone experienced this anaemia? My GP says there is an anaemia of chronic illnesss and stress and I have certainly been stressed. My hb and hmt are 30% below normal. My diet hasn’t been too bad although of course there are periods I am too sad to eat.

Thank you for your advice once more. You are my sunshine x

[piglette]

I have had anaemia. It was noticed when I had my hip ops and they gave me a blood transfusion each time.

[Nightingales in reply to piglette]

I was anemic after my hip op but nothing like this and pills took care of it.

[piglette in reply to Nightingales]

In fact I was anaemic before my first hip op, they discovered it in the pre med. The first time they gave me the blood immediately after the op. The second time it was the following day after the op when I fainted and they gave me a double lot of blood. My blood pressure was 54/45. It took six hours to give me the blood and finished about one o’clock in the morning. In my case I think it is just me. I can understand how low you must feel though, in my case I had no particular stress.

[Nightingales in reply to piglette]

Oh, that must have been scary. My surgeon won’t look at me until my hb is normal.

[piglette in reply to Nightingales]

Surgeons are usually pretty fussy. I suppose operating on someone can be precarious, so they are often belt and braces with their attitude.

[Nightingales in reply to piglette]

Oh yes. I know he’s practising good medicine. It was just so disappointing to have yet another problem.

[piglette in reply to Nightingales]

I know how you feel. You just think everything is OK and then WHAM!

[SheffieldJane]

You are going through an awful period of relentless stress and terrible grief. I feel for you from the bottom of my heart. I am awe inspired by your courage and you even manage mild humour, you are a strong woman.

The smaller question about Pred and your procedures. Well I would want my doctors and or my technicians to know exactly what I had taken. Sometimes the advice differs. During my last Colonoscopy I had Hydrocortisone going into a drip, presumably to provide support for my Adrenal system. I wonder if you need 5 mgs more Pred? I wonder if they will do the camera investigation. I found that so much better. I just pretended the large camera capsule was a big soft capsule of fish oil and threw it back.Like magic it came out the other end after its journey had been traced by. Gastroenterologist on a screen I could watch. Good luck with the investigative procedures, I hope all is well in the end. Love and hugs Nightingales. X🌹

[Nightingales in reply to SheffieldJane]

Thanks Sheffield Jane. My strength is stretched to the limit I must admit. I hadn’t even thought of the capsule. It’s just the bog standard procedures. The nurse did say that I was too old and diabetic to qualify for both in one day so maybe that was it but I will definitely enquire. I haven’t got my instructions yet. If they don’t say anything about the steroids I will check with them.

Thank you so much for your kind words and helpful advice. You have made me realise that I really need to make sure that they know my meds and conditions. They are a bit conveyor beltish now. They are at the weekend in a small dedicated unit away from a large hospital. Love and hugs to you too x

[DorsetLady PMRGCAuk volunteer]

Oh dear, sorry to hear your issues continue... I think you need to discuss meds with medical bods, as SheffieldJane has suggested .. but taking Pred at 2am should be okay, however as it's GR you could take it before going to bed.. it then has a bit more time to get into system.

Has anything been suggested for anaemia?

[Nightingales in reply to DorsetLady]

Thanks. I will try earlier. It seems time to absorption for EC tabs is so variable. They haven’t given me anything. My GP wants to review after all the tests. She said pills aren’t going to do it so I guess it’s some kind of infusion if they don’t find anything. It’s a good excuse for a steak!

[PMRpro Ambassador]

Just to express sympathy for another pothole in the road and hope they sort it out.

The anaemia of chronic illness CAN be quite severe if it is ignored for a long time - and to be honest, your GP is a tad behindhand in coming forward as if it is that, they should have noted it long ago if they were monitoring you - the very basic monitoring is a FBC (full blood count which has red and white cells and Hb as its baseline, and urea and electrolytes. They SHOULD be done at diagnosis and then every 6 months - so this shouldn't have been missed.

[Nightingales in reply to PMRpro]

It was done last July and it was normal. Of course it was before all this happened. I don’t blame my GP. Our surgery is generally good but gone the way of a lot of them. No continuity. Now my GP has informed the manager that I must see her if at all possible. They also won’t do labs that consultants at the hospital have requested. I have to go to the hospital lab for those. It’s all about the recent GP funding changes. I had to pay over £300 for lab tests that were ordered by a private ophthalmologist. He tried his best, wrote a letter to the surgery but they said they had to be done by him. This wouldn’t have happened before but my “old timer” GP retired. I guess I am lucky to have on site lab, pharmacy, nurses and physiotherapist. It’s getting very hard to be a patient. I don’t know how the very old and frail manage. However, the two week referral has been very good so far, I got a second call today and I asked about the camera pill. She was on the ball and said as I am previously diagnosed with a polyp the dr wants to be able to treat if needed. She also said to take the usual pred dose and the dr will discuss with me on the day of I need any supplementary steroids. Yeah for nurses (I was one for 50 years

[PMRpro Ambassador in reply to Nightingales]

They are often more insightful than doctors - not always, I have had bad specialist nurse experiences too! I quite dread having to navigate the NHS when I return to the UK. All fairly simple here - my phlebotomy clinic is at the hospital which is 2 stops down the train line - has its own station - and the GP can see all my results on the computer system whether a consultant ordered it or her. If it comes to that - so can I!!

[random901]

Hi Nightingales. Whenever I've had a chronic illness (gut band adhesions, heart) I've also had anaemia. I don't know about you, but I've experienced more acute pain with the condition. I do hope things turn out well for you 🌺

[Nightingales in reply to random901]

That’s interesting. I am experiencing more severe pain in my legs from my back. Thank you for your kind words.

[Numptybrain]

So sorry you’re going through this, I suffer anaemia but mine is ferrous so I get infusions. I really hope they sort you out you’ve been through so much.

Take care

Wendy xx

[Nightingales in reply to Numptybrain]

Thanks Wendy. I checked my ferrous levels . Although normal they are low 32 on a normal range of 13to 150. Something to check with my dr. Folate and B12 are good good.

[Numptybrain in reply to Nightingales]

I’m on folate and B12 tablets, always wise to get checked

Take care

Wendy xx

[Frewen1]

Hi Nightingales, I have no medical advice to contribute… I just wanted to wish you luck and positive outcomes for all your tests, and send you virtual strength for all you’ve gone through and continue to deal with. I admire you. X

[Nightingales in reply to Frewen1]

Thank you so much x

[Fatsiajaponica]

Hi Nightingales, no advice just sending good luck and hugs, you have been through so much and now this to deal with. I hope that it settles down and you have some peace soon.

[Nightingales in reply to Fatsiajaponica]

Thank you!