Giving an update, I’m now on week four of methotrexate and hydroxychloroquine, and my recent blood test showed I was quite anaemic and rheumatologist thinks that bleeding internally somewhere- maybe because I was overdoing taking naproxen for around six months. I’ve stopped taking naproxen now and I’m just on paracetamol.. I’m so tired and fatigued. Any tips and advice on how to cope with this? Luckily, I am off sick now from work. Which is very unusual for me as I was working all the way through my pain PMR and while I was reducing from pred.
I just feel good for nothing. I hope everyone’s doing well.
Jess
Written by
JessJess21
To view profiles and participate in discussions please or .
If your doctor thinks you are bleeding internally have you been referred for that to be checked out? If not, speak to your GP. There is a very simple stool test looking for traces of blood from any internal bleeding - if it is negative then nothing to worry about, if it is positive, they can check if anything needs to be done.
Who put you on the naproxen? Especially while you were taking pred. That really is a no-no and now you are seeing the consequences.
Had you had your haemoglobin checked before? Anaemia is often seen in chronic disease, especially autoimmune ones, whether PMR or anything else.
True thanks, the doctor definitely advised me against taking naproxen but it was the only thing that was really managing the pain at that point. I’ve stopped taking it now. My 112 in September and it’s now 86 so it’s a drop. I have been referred to a gastroenterologist and will speak to my GP tomorrow. The fatigue is quite severe. I’m only taking paracetamol now and hoping for the best. Thank you for your post.
If Naproxen was managing the pain, that is a signal it may not be PMR. Shame doctors aren't as aware of the peculiarities of PMR as they might be, That is a big drop - and to be honest, not sure an "iron tonic" will achoeve a vast amount. You don't happen to know your other haematology results do you?
Oh dear. Sadly Naproxen does come with this risk and you were given such high doses so I guess your odds were greater. I hope there is a plan for further investigation and treatment. How anaemic is “quite anaemic”? Some of your fatigue could well be down to this but I hope they are going to find the source and take the right action.
I was a little anaemic before I went on methotrexate, haemoglobin 112, now it’s dropped to 86. So hopefully they’ll find out where the blood is going. I have another blood test next week hopefully it’ll go up a bit.. the tiredness is quite debilitating.
They try to avoid blood transfusions wherever possible - but an iron infusion is really impressive at building haemoglobin. My husband improved amasingly within a week or so.
Your post raises many possibilities that your Rheumato should have discussed with you. Surely your blood was checked just before starting the Methotrexate? If you were not anaemic at that point then has some recent event provoked it....eg the Methotrexate itself(you are on folate supplements ?) . If you were anaemic pre treatment then its odd that it was initiated before investigating why.
I can only offer advice about iron supplements, although I agree with the others that the cause of the anemia should be investigated.
I'd needed iron supplementation as a young woman after a stomach bleed (probably caused by careless use of aspirin) and found tablets horrible. So when I presented with PMR and practically non-existent ferritin I told my doctor I couldn't face taking iron pills. She suggested liquid iron. This has worked out well for me. Once my ferritin was up to an acceptble level I just take a bottle every few months to keep up the level. You have to use up the bottle in a couple of weeks. Also to aavoid staining teeth, rinse mouth or brush teeth right after a dose. Although I don't think it's been much worse than the tea I drink several times a day, and well worth it to avoid the pills.
Sounds like your other blood indices have suggested blood loss cause for your anaemia, hence referral. If your GP reccomends iron supps, even just one or even a half 250mg iron tab a day will give you a substantial ammount more iron than the 15mgs in the mixture above.
For both my hip replacements I was found to be anaemic and was given blood for it. The second time I had double dose and it took six hours to pump into me. It was nearly one o’clock in the morning when it finished. I never discovered why I was anaemic.
"Anaemia of Inflammation". I had it. Look it up, iron supplements aren't helpful, you have the iron in your body, it just doesn't show up in your blood for some reason.
Bless you! You are not “good for nothing” just poorly at the moment. Sending healing hugs.
I became anaemic too dropping from 140 to 111. Although not as low as you, my starting point was higher and it was a similar amount in drop to you. You can get normocytic anaemia with inflammatory illness. Normocytic anemia happens when you have fewer red blood cells than normal, and those blood cells don't have the normal amount of haemaglobin. Usually though the Mean Cell Volume (MCV) is normal. Do you know what your MCV is? Nonetheless , my GP ordered a whole raft of tests: poo test, CT scan of chest, abdomen and pelvis and loads of blood tests - all fine. Healthcare providers treat normocytic anemia by treating the underlying illness and as the steroids have reduced the inflammation, my iron count has increased. However, waiting and seeing is not something I would be happy with. Do hassle your GP and tell him you want to rule out anything sinister. Though unlikely (given your history of Naproxen use), better to be safe than sorry in my book. Good luck and keep us posted 🥰
i have suffered from iron deficiency anaemia on several occasions. When my serum ferritin was down to 4 I had an endoscopy and gastroscopy on the same day. It was found I had gastric (stomach) polyps which were biopsied and later removed. I understand that bowel polyps are more the norm and stomach polyps quite unusual. At the time I did not have PMR. It took 18 months to get the ferritin levels back within the normal range. Also like you I had been taking Naproxen as I have end stage OA in both knees. You certainly should be having investigations. There can be many different causes. Hope you find the answer.
Ditto all of the above. I actually passed out before my anaemia was noted by GP! Levels were so low he said I was close to requiring a transfusion. 🙄They did all the poo and intestine tests but didn’t find anything. So I’m still taking a daily iron tablet (down from two iron tablets). I thought it might be the calcium tablet that I take for osteoporosis, coupled with PMR also (calcium not good with iron), but am still on the investigative journey. Due for another blood test in New Yr to see effects of reducing down to one iron tablet. I thought the tablets were making me a bit ‘loose’ (sorry) - GP advised could be iron tablets, hence reduction. However, I’m on quite a few tablets, so could be anything. A previous GP said I could be iron deficient just with the PMR, although was surprised with the deficiency. (Not sure the 2wks of hiking along the Norfolk coast helped prior to my faint - kept telling LOH I didn’t have much energy!!) I’ve started eating more iron rich foods…. Have now managed another hiking holiday (whilst on the iron tablets) albeit at a more sedate pace, so things don’t stop.
It is not you, so don’t think that, but beware the journey to a reason may take a while & that the reason may not be found - may just be PMR and medications. The iron tablets I have are only aspirin sized, so unsure if you were worrying needlessly about them - gives black poo!🤭
All the best on your anaemia journey and hope it is nothing more serious. 💞
Much the same happened to my MIL - she had been breathless and really unwell but her idiot GP had decided it was heart and put her on digoxin. No tests before or after (digoxin must be monitored to avoid toxic levels). She came to visit us in Germany and we arranged an appointment with a colleague of my husband. Who took blood - and her Hb was just over 4! She took a letter back to her GP who looked surprised and said "but you don't LOOK anaemic". All he had done was pull her eyelid down! But he sent the nurse to the house to give her iron injections. He did his best to kill her off and we are pretty sure he hastened my FIL on his way with poor care. And I still see GPs look at eyes to check for anaemia (I watch a lot of medical docusoaps). No idea why we have laboratories!!!
When I was pregnant the nasty cheap stuff the NHS uses as default gave me the runs. Had to be changed to the more expensive version - that was fine.
thank you so much for your reply, it reassured me as well as lifted my spirits. Hiking up the stairs is hard enough let alone the Norfolk coast. You must be doing something right. If only I could follow your footsteps. Really thank you for this. I know we’re all different. As soon as I’m able to, I’m going to do that hike. With love. J
Always good to know someone is on a similar journey! I’m meant to do walks for the osteoporosis. Difficult in the winter. Realise not everyone is able, but shows what can be done - baby steps! All the best.
I also had severe a emia with PMR. Dr thought I was bleeding somewhere, but all tests said no. I was finally given iron with an infusion and immediately felt better. All my other blood components were out of kilter at this time as well. I continued on the Prednisone and am doing well. Blood levels have been in normal range now. It took a long time for diagnoses to get to the bottom of this crazy illness. I know what you are going through and hope you get relief.
so good to have your response, makes me feel you’re not alone. And of course, sorry you’ve had to go through this as well. It’s a real strange one. Lots of love. Jess x
Hi JessJess21! Of course the cause must be found for the deficiency, but in addition iron-rich foods help me. I'm a great fan of laverbread, which can be bought in tins. In fact, I'm about to spread some on bread fried in olive oil. Also vit C will help absorb the iron. All the best.
no wonder you are fatigued - I was down at 90 blacking out and unable to walk far - had all the tube up and tube down things ( I was dreading them but they were fine didn’t even have a sedative cos I was a carer for my husband) all fine so continued with iron and folic acid until during a hospital visit they came up with iron infusion - magic still fine after several years!!
hi JessJess21. I hear your pain. I was recently anaemic and know how debilitating it can be. Just taking the washing out of the machine would make me breathless and weak. The doctor I saw was a locum. He didn’t know me but he was very thorough in finding out why I was anaemic. I had blood tests, a gastroscopy and a colonoscopy. A lesion was discovered in my bowel and I was quickly into a system in order to have an operation to remove it. I also have pmr so my steroid prescription was monitored and I had two iron infusions. I was extremely lucky that this doctor didn’t just give me iron tablets but decided to go further with the investigations. You need to know for sure why you are anaemic. It’s not enough to say ‘it could be because …..’ I know how hard it is to push for the right treatment when you are feeling low and ill, but it could be something that needs urgent treatment. Good luck.
thanks so much for this, both my consultant and Gp have now referred me for Gastro investigations, upper and lower- so that’s probably the right thing to do, they’ve told me not to take the iron just quite yet so you’re probably right. At one point today, I thought I was gonna call an ambulance. But I’ve made it through. Thanks for all your help and it’s an inspiration to know that you’ve managed and got the care and treatment that you needed to. We keep going. X
Yes, once in the system it seems to have a life of its own. Hope they get it sorted soon; anaemia is so debilitating and makes you feel very ill. I tried to keep going with Pilates and table tennis but had to reluctantly give up. Now I’m back and loving it! Take care of yourself.
from someone who had weekly blood transfusions and iron infusions three monthly. This went on for 18 months. haemoglobin plus ferreting should be checked. Plus they need to check where blood coming from. Stool samples did not pick up bleeding for me. My stomach was quite bad and I needed to have 8 weekly treatment on stomach for over a year until they stopped bleeding. I don’t get transfusions now or iron infusions. I get prescribed iron which is better than any over the counter stuff. Sounds like you will have to fight your corner as I had to. Information is everything I made sure I knew what I was talking about and took evidence at times so all they could do was wriggle but I got the results and treatment required. That has all changed I am now attending the best hospital with the best people. I am very lucky, to the point I’ve hung up my boxing gloves. Good luck
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Depo-Medrone 120 jab. How long do the effects last?
TCZ 7 months in, and tapering Pred,- update. 
What now???
Lower back pain muscle or flare?
