Blood test frequency

[margiebell4]

How often do other PMR sufferers have blood tests? Should I request them or wait for the doctor to ask me to have one?  I haven't had seen a doctor or had a blood test since August. My last ESR was 40 (down from an initial 120)

[Celtic PMRGCAuk volunteer]

Margie, although it is important to judge how well we are doing by our symptoms, not just our blood test results, eight months is rather too long without having your blood tests repeated, especially as you are someone who had such a high ESR at diagnosis.  Although your last test was so much improved at 40, that is still a little raised.  I was monitored much more frequently and, in fact, even though I've been off steroids and in remission for almost 4 years, I still ask for the occasional repeats if I get stiff and achy for more than a few days.  

[piglette]

I used to get tests done every month but have increased to every three months unless there is a glitch when I go back to monthly. I tend to make the appointments myself and decide with the nurse which ones to do in addition to ESR and CRP. I get a printout each time so I have a hard copy of how things are going. My GP checks and writes notes against the results. I have not actually had a face to face appointment with her since October 2014, although I have talked on the phone if things are not going so well.

[venezia1]

Hi. Two years into RA I was diagnosed with GAS, and put into 80mg steroids. For some time after that I was told to have weekly blood tests, which were a mixed blessing, as you can imagine. Then when things stabilised a bit they went to fortnightly. Over the four years since  I've had periods of monthly tests and fortnightly, if medication was changed. Now I go roughly monthly, and that is because I'm on Leflunomide to help in dropping the steroids (I'm down to 8mg). My GP is very good and is mostly guided by me, now - if I am not feeling well he allows / suggests I go back to weekly till I feel better. As Celtic says, seven months is too long a period to go without this information, even if your symptoms  don't suggest anything might be wrong, so I would ask  for monthly tests to be on the safe side.

[venezia1]

Sorry - New phone loves predictive text, so should read GCA, not Gas!!

[margiebell4 in reply to venezia1]

Haha, I did wonder!  Thanks everyone for your replies. I will ring tomorrow to make an appointment. I am concerned about the side effects of pred too as it's nearly a year since I started taking them. 

[PMRpro Ambassador in reply to margiebell4]

I've been on pred for well over 6 years - I haven't crumbled yet! I put on a lot weight (and lost it all again by some hard work), my cholesterol and BP have been up - and back down. In 4 years there was no change in my bone density. Otherwise I'm not aware of anything significant.

But a check every 6 months max. of all the things that may happen is a good idea. A good GP would be checking BP more often. 

[Annodomini]

I have one roughly every time I reach another mg's reduction - ie about every six weeks. I make an appointment with the health care assistant, tell her what tests I need and if there's something untoward I get a message from the surgery to make an appointment, like last week, when I turned out to be a bit iron deficient and was put on iron supplements.

[Fracham]

I have had a blood test every four weeks since I was diagnosed with PMR five years ago.  See your GP and insist on a test soonest.

[Greensleeves]

Well once again it shows the disregard and lack of care from my GP . I haven't had a blood test for 18 months and that was requested by the Rheumatologist. I must change practice instead of dilly dallying and staying in bed for long periods. 

Thanks for making me sit up Margiebell. xx

[11caroline29]

I started with blood test weekly since July 2014 then moved to fortnightly and since Dec 2015 now just monthly. So glad. However I guess if you are reducing steroids a regular check is required. My ESR jumped up to 40 since last reduction to 8mg so told now to reduce monthly instead of fornightly.

[PMRpro Ambassador in reply to 11caroline29]

Um - if your ESR has jumped, especially to a level way above the top of the normal range, then the last thing you should be doing for the moment is reducing any further until you see what happens. 

You shouldn't have a kneejerk reaction to a single raised ESR/CRP level, especially if you have no symptoms since neither are specific to anything in particular, it could be a chest infection or even just a cold that caused it, but you should also not reduce any further until you have some idea of why or it has gone back to where it was. 

Reducing every 2 weeks also puts you at risk of not knowing where you passed the point at which the dose was no longer enough - it could have been 6 weeks ago but you kept on the downward path. You really do need at least a month to know if where you are and the previous dose were still holding the inflammation well. If you go from a dose that was just enough to manage each new day's inflammation but the underlying inflammation was very low, then it will take a while for the bucket to fill - so it could be some weeks before it overflows and there are symptoms.

[11caroline29 in reply to PMRpro]

Thanks for your reply. Unfortunately lots of symptoms since got to 10mg. ESR just been increasing each time. Told by GP & Rheumatologist to keep reducing. However seeing Neurologist on Thursday and will discuss with him. Unfortunately he is keen for me to go on Methotrexate after Mycophenolate didn't work but I refused so he is not very sympathetic to my pain on reducing steroids! You can't really win. Starting physio (Emmett technique) next week. Anything worth a try. Such a long slow journey from 40mg.

[PMRpro Ambassador in reply to 11caroline29]

You need another rheumy who knows what they are doing - because this one obviously doesn't. 

Ah - just checked your profile, NI. There is another new lady on the forum from Belfast asking about options. Someone in the Republic also asked recently - you replied then you had a good private rheumy. Is this the same one?

[11caroline29 in reply to PMRpro]

That was the second one I saw at a private clinic. He seemed to think I was sensible enough to decide on my own reduction plan. Thank goodness for some good advice on this forum. Keeps us all sane if that's possible on steroids!

[11caroline29 in reply to PMRpro]

Yes he appeared very knowledgeable about Pmr , Gca & Fibromyalgia. When I saw him in Jan I did not have raised ESR. I would actually see him again as he is the only professional that I have seen in almost 2 years that understands my conditions.

[PMRpro Ambassador in reply to 11caroline29]

Which is, when all is said and done, the whole point of seeing a specialist...

[cdenoncourt]

It has been the routine of my Rheumatologist to test the ESR and CRP every month and follow up with a phone consultation using a combination of the results and my perceptions to make his recommendations. 

I see the results online and have a complete 4 yr. record of how results related to the flares I have experienced. I will say that in my case my perception has always been ahead of anything the tests showed, so I echo what others have said: we are each probably the best judge of whether or not we are heading towards a flare. Still it is useful to have the blood tests periodically to have another input to evaluate as we make our way with this disease.

[PMRpro Ambassador in reply to cdenoncourt]

It isn't uncommon for the ESR/CRP to lag behind any reappearance of symptoms. It doesn't only happen in PMR, it is also common in RA. The GOOD  rheumy listens to the patient who says "I'm flaring" and treats the patient's perception and not the lab results. They are only ever a guide.

[margiebell4 in reply to PMRpro]

I would have thought they would want to monitor the pred side effects, if nothing else 😟  I rang my surgery this morning but A doctor has to make a blood test appointment, but the doctor who has been treating me couldn't ring me until 18th April so the nurse practitioner is going to ring me on Friday. 

[Pipistrelle]

At my GP practice, they have a practice nurse who does blood tests and I could just schedule tests on my own (this is probably the case in many practices, worth asking). I did them every couple of months in the second year of being on preds, as I wanted to keep an eye on inflammatory markers as I did reductions below 10mg. I kept everything in a folder and charted the preds dosage and the drop in ESR and CRP at various points. It was actually very encouraging and helpful to see even small improvements.

[Doralouise77]

When first diagnosed with PMR I was ordered blood test every month.  This continued when I got the GCA diagnosis until I started to taper and get flares.   Now I'm having them done weekly as they seem to be jumping all over the place even though not tapering now.  I was told that the CRP is a more recent indicator of the inflammation than the sed rate.  My rheumy who diagnosed me with both right off the bat doesn't order sed rates because of this and also because apparently it can be prone to change more readily for other reasons.   I though like to know what it's doing so always tick it off myself :-). And most of the time it's only the CRP that comes back elevated in me.  And I have read that some people's markers don't show elevation in PMR so perhaps in me it will always just show in the CRP.  I wish you good luck and feeling better soon.