I've been diagnosed with RA and Lupus for over 35 years. I went through most of the known drugs over many years before being accepted on Enbrel which was amazing and gave me back a quality of life I never thought I regain.
However I was switched to Benopali under the assumption it was the same generic drug as Enbrel but I started to go downhill almost immediately. I told my consultant but as it was about the time of the start of Covid and face to face appointments were stopped for a while he decided to stick with it and see if it improved. 2 years on he has now agreed to change me to toczilumab via infusion from early March. I'm hoping that will help with the general arthritis.
My main query here is that over the last 9 months I have become very anemic and my iron stores are still very depleted, despite a 3 month course of iron tablets last year. I'm now on my second course of iron and it definitely is helping, especially with breathlessness, headaches and fatigue , ( This time at a much higher dose.)
I've had both endoscopy and colonoscopy which have not found a possible cause for the anemia but both my GP and rheumatology consultant seem unsure if the uncontrolled RA is a factor. I've had to be very forceful at the GP surgery just to get the iron levels retested as "it was only done 6 months ago". When the results came back at an even lower level I did have an immediate text message to restart iron straight away and this time to say I must request another test after 3 months.
I have read that anemia can be as a result of an autoimmune disease and wondered if anyone else has had a similar experience.
I would add that my consultant has been very good over the years but is now a bit annoyed at the GP surgery as he thinks they should be doing more things like this and organising bone density scans etc and actually said I must keep on at them. So much easier said than done as every time I ask them I'm told the clinic deals with it. I feel very much stuck in the middle now but used to have a very good GP who did actually do the general background work. Unfortunately he's now retired so I'm going to have to be more proactive!!
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Alberta69
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time to get out the pen….I think a calm letter to your GP practice saying you feel your health is suffering because of the lack of co-ordination in your shared care agreement. You don’t feel it is appropriate for you to tell the either the clinic or the practice what to do, and nor do you have the authority. But as a result you are not getting the neccesary care such as x,y and z that you have been waiting for.
You would be grateful for this to be addressed. Etc etc
Thank you for your reply. I think from now on I will definitely be more assertive (in a polite way of course.)
The fact my gp surgery will not allow patients to see a specific doctor hasn't helped. Appointments can only be made on the day and with the available doctor on duty. On the rare occasion I have actually got to see a doctor they don't know my case history and so go by the latest notes. One of the more helpful doctors actually admitted she needed more time to read my notes than the alloted patient time and actually rang me back at home later with several tests, including lung x rays, bloods and ECG being arranged. But I have found it impossible to get a follow up appointment with her.
I think I will start by asking for a copy of all the test results she requested as all I have been told is that they were within acceptable levels. This includes the blood tests that I now know where not. At least then I will have more facts and feel more able to question anything I think is not right.
Years ago I used to have regular bloods with Methotrexate but I developed adverse reactions to it and stopped it. I've not had any regular testing since being on biologics. With hindsight maybe I should have been more insistent.
It probably is worth getting copies of your own blood results as a double check. I (years ago) had experience of ringing the surgery "results line" and being told that my blood test results were OK. When I later went back to see a GP, she said that my ESR levels were way too high. Of course, when you are on RA drugs some of the results may be out of the usual range and may need rheumatology to say what is acceptable.
Did you have any trouble getting the copies? I used to have a booklet which I kept blood results in when I had monthly methotrexate tests but I can't remember exactly how I got these tests results. I know the bloods were taken on the GP surgery by a visiting phlebotomist but it was over 15 years ago.I certainly intend to ask how I can get them now.
Depending on your surgery, you may be able to register for one of the apps that allow you to see your results online. I use Patient Access, but I think the NHS App also works.
Someone else mentions on-line access. I think that only applies in England
All my routine tests have been done by a nurse or phlebotomist at the GP practice. When first diagnosed, like you, I was given a log sheet to complete and would get the nurse to read out my last set of results when attending for the next test.
Later, the nurse would print off these numbers during my blood test appointment .
With various surgery changes, it became the practice that I had to ask for a copy at reception.
Surgeries vary. Some will just print off any results that you want there and then. My current practice will ask the patient to sign a form which then gets authorised by the doctor before you can collect the print-out.
My wife's previous surgery wanted £10 to print results - that was over the top. A pound or two to cover printing costs might have been reasonable. Pretty sure that they are supposed to give you such things on request.
If you are asking, go armed with the date(s) of the blood tests to avoid any confusion.
I have severe problems with anaemia, and after attending haematology clinic , eventually was diagnosed with anaemia of chronic disease.This is a common problem for people with rheumatoid, but unfortunately is often ignored, despite low haemaglobin being noticed in regular bloods.
I have had problems for several years, compounded by an intolerance of iron in tablet form, and latterly in liquid form. It's complicated by a bowel that twists, resulting in several hospitalisations in the last 3 years.
I have had one transfusion of red blood cells, which worked for a while, then an iron transfusion, which again helped for a while.
Presently, my hgb is dangerously low, leading to breathlessness, extreme fatigue, pallor, weakness. Later today, I am scheduled to have a one pint blood transfusion, and one unit of iron, followed by another unit of iron in a week's time!! Fingers crossed, I will soon be feeling human again!
You must make sure that your problem is addressed and monitored properly. Both your consultant and GP should know of the risk of this anaemia with RD, and be ready to treat it straight away.
Thank you for your reply. I'm so sorry to hear how bad your anemia has become and will definitely take your advice to keep on at both the GP and consultant. I am responding to the iron tablets and already feel a distinct improvement after just 2 weeks.
It was frightening how ill I felt before taking them and if I hadn't have been so insistent on having another blood test I would have been getting worse every day. My previous tests showed low haemaglobin but the last one showed very low ferritin which I now know is my own body's iron store. I will make sure I stay on iron as long as both these levels are low.
It's just so frustrating how neither my consultant or GP seem to think it's relevant.
I had tests last year that showed low iron levels and now take iron tablets every day. The gastroenterologist said this week that l must not ever let anyone tell me to stop taking them!!!! I have also had the issue of the consultant saying something l have asked him about must be dealt with in the community and the GP saying l need to ask the consultant. I have a feeling that the GPS are very wary of doing something that hasn't been okayed by the consultant. And l suppose in fairness they are not the experts in GCA and PMR.
Thanks for your reply. It seems you have been having similar problems as me, both with the anemia and the problem between the clinic and GP surgery.
I never used to have this problem when my GP practice was a smaller practice but about 6 years ago they joined into a bigger community health centre with several other practices in the area. We now have a lovely new building but have lost the individual patient care.
I will be much more proactive now in chasing things up. Plus, my hospital consultant has said he will asking the GP surgery to start monitoring routine bloods on a regular basis. He usually copies me in on his letters to the GP so it will be interesting to see how he words it!
Our GP practice amalgamated and while they are still very good things have definitely changed. My blood tests are in the next county which is where my rhemy is based. The county boundary is only half a mile from us. My GP never gets a copy and neither do l. I was just told he would phone me if there is a problem. The same happens the the other way my rheumatologist never gets any results from my GP. It's nuts that the computers just won't talk to one another.
I have always had a very good relationship with my consultant and I know I'm very lucky as he still sees me in person rather than one of his registrars. But it was one of his registrars a few years ago who set up me being copied in with their letters as she realised that the GP was not following up on their letters.
Another thing my consultant is annoyed at present is that the GP has not followed up with bone density scans as I also take a low dose of Prednisolone along with the Enbrel. He has requested one now but says that's should be up to the GP.
As I'm in the middle of it all I think I will probably be very unpopular with the GP as I'm going to request copies of all my notes and test results. According to the Welsh NHS which I come under it should be easy to obtain but I might wait a few more weeks till I'm feeling totally back to normal.
Both my clinic and GP are in the same health board so there really shouldn't be any reason for computers not talking.
Thanks for responding. It's good to hear how other people get on with similar situations.
I take baricitinib daily and at a recent GP check I was told my blood showed anaemia also. I have been given three months ferrus iron tablets and was told it was because of my RA and biologics. Sometimes the cure is worse than the issue let me know how you get on🌺
I will definitely update my message after the 3 months is up.It will be interesting to see if the GP contacts me or I have to tell them the blood tests need repeating.
What I find surprising is that both the clinic and surgery have not made the connection between the anemia and long term RA.
I was told to take the same tablets for 3 months before re test. I will make sure its a few days before I finish the course just in case my levels are still not back to normal.
Firstly I think it is unfair of your rheumatologist to put the onus on you to ask your GP to organise investigations. Either of them could order a bone density scan and I think ,on balance, it makes sense for the rheumatologist to order it, as he is in overall control of your RA/ Lupus treatment. I have a bone density scan every 3 yrs and it is organised by my rheumatologist. It sounds sensible for your GP practice to repeat your blood tests after your course of iron to check your response to treatment and to monitor it, to make sure it doesn’t just drop again when you stop the iron. I am sure if the Rheumatologist writes to your GP requesting this, it will be done without you having to be piggy in the middle!
Although RA/ Lupus patients do get anaemia, especially when poorly controlled, as it is iron deficiency anaemia, I am not sure that a gastroscopy and colonoscopy are enough to say your anaemia is due to the RA/Lupus. If your RA/ lupus comes under control with your change of treatment in March then it seems likely that the iron deficiency anaemia has been due to your inflammatory disease. If the iron deficiency persists they may need to investigate further such as checking that you absorb iron normally. Also you don’t say if you are taking other medications like non steroidal anti inflammatory meds which could cause blood loss which don’t always show up on a gastroscopy or colonoscopy.
I hope the anaemia resolves and that your Rheumatologist and GP practice can behave like grown ups and work together to do their best for you.
Thanks for reply. Sorry didn't pick immediately as I've been away for a long weekend to see the grandkids. I haven't seen them for 6 weeks and so it was a lovely catch up.
I think your right about not accepting that the fact the all clear in gastric tests shouldn't be the end of the matter, especially if the iron levels continue to stay low. However, I'm hopeful it is just the long term uncontrolled arthritis as it has coincided with the last year of a definite decline in Enbrel's efficiency. If the new drug works well, fingers crossed, both the arthritis and anemia will be much better.
A long time ago (well over 12 years) I was told not to take any anti immflamatory meds at all, even over the counter types, as I did have a stomach ulcer at that time. But the last 2 endoscopies didn't have any signs of bleeding or ulcers. I do have a hiatus hernia which sometimes triggers really bad reflux and Gerd. I think that's why I had the repeat tests this time. And I will definitely be requesting full blood test when this 3 month period is over. I will contact them if I have not heard in the week my prescription runs out.
I have had time to think about how proactive patients in general have to be these days, especially in Wales. I'm hoping that by politely asking for copies of my records covering this last 6 months I will have enough information to see exactly who I should be chasing up more. Plus, if I can see my actual results for each round of tests then I will be able to notice what levels are high or low for me. That's how it worked when I was on methotrexate as I was give all the results to put into a booklet. In theory the rheumatology unit would monitor it but I remember on one occasion I pointed out an increasing high liver function result which resulted in me eventually being taken off the drug. I was encouraged then to know what most basic blood test levels should be so I may try to nicely say that it could be helpful all round!
I've really appreciated the responses I've had on this site. It's so good to have responses from people with similar problems.
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