Infusion News - the Good, the Bad and the Ugly!

[Midnightblues]

The Good: Approximately 18 months ago my pro-active Consultant Rheumatologist (treating me for osteoarthritis and RLS) requested an iron infusion at Royal Cornwall Hospital Truro, which is where I live, as a last resort treatment option for severe RLS. This took place in September 2024. After 2/3 weeks a blood test revealed my ferritin level had shot up from 47 to over 700, but after 6 weeks I began to suspect it wasn't going to work for me. However, a couple of weeks later I began to watch films in the evening all the way through, sit comfortably through dinner, and get 4/5 hours sleep instead of 1 or 2, or sometimes none at all. I was overjoyed but this was tinged with sadness that my wonderful partner, who had passed away six months previously, wasn't able to share this with me. He had been my rock through all the desperately hard times which most of you will know about.

The Bad: Fast forward to now. The effect is wearing off and I phoned my GP to tell him the good news, and could I please have a blood test to check current ferritin level with the possibility of repeating an infusion? By the way, I am 5 weeks post total knee replacement, jerky legs are not good as an aide to recovery from this frankly brutal surgery.

The Ugly: Zero response from him to the good news. A negative response to the request for a blood test, and I was informed that the hospital is "pushing back" against requests for infusions. No comment about the knee, but an outright ageist lecture that pain (opioids) medication was not a good idea for elderly patients, it could increase their confusion and liability to falls. All delivered in the coldest robotic tone. Perhaps 'the elderly' shouldn't expect to have any quality of life, and it would be more convenient if they just crawled away and died quietly in a corner. I don't expect a George Clooney performance, but a little empathy goes a long way.

Slap in the face, left feeling very low and at the end of the line with nowhere to go. Thanks for reading.

[SueJohnson]

First off your ferritin wasn't really 700 since you shouldn't test for 8 weeks after an infusion, but obviously it did help. You can order a home test for ferritin from Home Health UK (homehealth-uk.com/) that does does an Iron Profile Blood Test Kit for £35.29 which includes postage to the lab.

[SueJohnson]

If you can afford it you might ask the hospital if they will do a private iron infusion. They usually charge around $800. Or there is Doctor Wayne Thomas a haematologist in Plymouth who might arrange an iron infusion either through the NIH or privately.

[SueJohnson in reply to SueJohnson]

And I have a name in Exeter which is farther away if you want it.

[Joolsg]

I'm so sorry to hear that your GP is being so impossible.Clearly iron infusions work for you. Many people with RLS need infusions every 6 to 8 months.

You can write directly to the haematology department and explain that you had a very good response but it needs to be repeated.

Alternatively, if you can afford it, a private iron infusion is £800.

And I'm so sick of doctors telling us that opioids are bad etc.

RLS is BAD. Lack of sleep & nightly torture is bad. It causes depression, diabetes, heart disease, high blood pressure, high cholesterol.

So sleep is more important.

If you can see a specialist, you would probably respond well to opioids.

Many of us are completely RLS free on Buprenorphine.

I have MS. I have falls as a result.

But Buprenorphine hasn't made it worse. In fact my MS has improved because I'm getting sleep & rest and no longer have that 'wound up anxiety' that accompanies RLS.

Opioids are not as likely to cause dizziness and falls as gabapentinoids.

So demand a referral to a good specialist and write to the haematology department at the Royal Truro pleading your case.

[Midnightblues in reply to Joolsg]

Thanks Joolsg, I agree with you that sleep deprivation is dreadful and undoubtedly leads to a worsening of any other condition, plus the added bonus of anxiety, depression and suicidal thoughts. I have managed to obtain a face-to-face appointment, though not with my GP, this week and will request referral to a specialist.

[SueJohnson]

Did you ever contact Dotmowatee has doctor who prescribes taginact as I suggested?

And yes it is possible for that to happen but for the vast majority that doesn't happen and you would know quite soon if it did so could stop it.

[Midnightblues in reply to SueJohnson]

Thanks Sue - I've tried to find Dotmowatee's post about Targinact but unable to locate it. I can't remember doing so, but there have been times when exhaustion and depression have robbed me of the ability to take any action at all, even when it is in my own interests to do so. Not sure how to find previous posts, either my own or from specific others?

[SueJohnson in reply to Midnightblues]

You don't need to find her post. You can message her. To do so click on chat at the top of the page and then on new and enter her name. You can then write her.

[puzzler1]

I think I'm having the same problem as you! My RLS has been getting worse and a recent blood test showed my levels are low. I had an infusion 3 years back and I have now asked my doctor (in Exeter) for another one. They are only prescribing iron tablets (ferrous fumarate 210mg) but I know they'll upset my stomach and be slow to help. I am going to keep on requesting the infusion and hope they give in. It's ridiculous that such a simple procedure isn't immediately offered for sufferers like us. And I can't afford £800!!

Good luck

[SueJohnson in reply to puzzler1]

You might want to see Doctor Wayne Thomas in Plymouth, a haematologist who can arrange an iron infusion and is very knowledgeable about RLS