Conjunctivitis and downhill from there!

[Pmrmolly2018]

Had PMR since June 2018 ..20 mg. Been doing well with 12 mg reduction achieved two weeks ago. Woke up with sore eyes, by the afternoon so bad went to A&E as couldn’t see and eyes seriously swollen and septic. All dealt with efficiently but had temperature and ill and in bed for 4 days. Now terrible pain in shoulders, and feel like back to bad old days. I have increased back to 13mg but pain and unwell feeling still there. What should I do? I have been left to manage this illness on my own. Our surgery is overwhelmed as 3 practices in our area have closed! We have a high ‘old age’ demographic. I just give an email update every 2 months. Any advice welcome.

[suzy1959]

Poor you! I think eye infections are really horrible. It could well be that the strain of the infection on both mind and body could be causing a flare and that you still haven’t got it under control. You could try 15 mgs. As long as you are not on the higher dose for more than 2 weeks, you can reduce again back to where you were comfortable quite quickly. Unfortunately, the flare will not go and may get worse if you don’t hit it with enough pred.

I am sorry to hear that you are so on your own with this. Have you tried to get a referral to a rheumatologist? It may well be worth it since you have no GP cover. You might even consider seeing one privately as one consultation is not that expensive. One of the main things I have learnt is the we patients need to become our own advocates and be proactive in getting the help we need.

[Pmrmolly2018 in reply to suzy1959]

..I saw a Rheumatoligist privately at the start as there was a 6 month NHS ‘waiting list’...he was more than uselesss. Just another ‘old woman’ with atypical (whatever that is?) PMR...”it will probably last about 2 years”....no faith in him at all....

[suzy1959 in reply to Pmrmolly2018]

Sorry, I was also going to say that, depending on where you live, the forum members can advise on a good Rheumy in your area. Whereabouts are you? I am on my 4 th Rheumy- the first 3 were useless!

[Pmrmolly2018 in reply to suzy1959]

...I do belong to a local Support Group in west Sussex BUT after the last debacle do not particularly want to ‘go fishing’ for an alternative. The consensus was that all the services are overwhelmed...and PMR is quite ‘common’...also private is an expensive exploratory route and a bit out of my league. I would probably have been better staying in NHS and waiting as then would have been properly ‘in the System’ with proper follow ups planned. I now miss out on this..

I think I will just have to go back to GP and square one....I had to wait 3.5 weeks for a non urgent phone call.....BUT probably better as clearly long term illness and need professional advice...oh dear...I was doing so well. Thank you for your thoughtful advice.

[Soraya_PMR]

How about an email to the surgery tagged URGENT, updated with your latest problems. Then a phone call to the surgery asking the receptionist to bring the email to the doc’s attention.

[Hidden in reply to Soraya_PMR]

Good Reply Soraya x

[PMRpro Ambassador]

Are the eyes still a problem? Are they sure it was conjunctivitis and not uveitis? Did you see an eye doctor at A&E? Have you tried an optician with all the examination facilities (some independents and Specsavers and Vision Express)?

But it does sound as if it wasn't "just" conjuntivitis and you have had something systemic (affecting your whole body) which would account for how awful you feel. Systemic infections often do increase PMR/GCA symptoms as the immune system is upset again. The answer to that is usually to go back to the higher dose until you have recovered - up to 7-10 days at a higher dose you can usually drop back to the lower dose without problems.

[Pmrmolly2018 in reply to PMRpro]

Took Soraya’s advice and emailed my GP. He responded promptly advising up pred to 15mg .....then yesterday, very ill and keeled over when out of bed in the morning. My husband phoned surgery...they called back promptly and sent round home visit within a couple of hours! Just brilliant.....They believe a virus which has brought my blood pressure right down 113/60 hence dizzy and loss of balance.... rest and back to them if further deterioration....and check up next week.

I have upped this morning to 15mg ..still feel very wobbly so will be patient.... BUT if this is a systemic virus, and I have shoulder pain, is this more likely virus or PMR. Am I upping the pred unnecessarily? Should I do this for a couple of weeks as you suggested and comeback down slowly to 12.5?

[PMRpro Ambassador in reply to Pmrmolly2018]

One of the things many doctors recommend is to increase the dose of pred temporarily when the body is having to cope with the stress of an infection or injury. It is even more important then you have been on pred for a long time and have got down to 7.5mg or less. Being back at 15 instead of 12.5 is not so awful and you can drop back at this level more easily than at lower levels - but if you are only on 15mg for a week to 10 days there should be no problem getting back to 12.5 quite quickly, even overnight which a lot of doctors would have you doing anyway.

I hate been proved right - but it did sound horribly systemic. Get well soon.

[Pmrmolly2018]

Thank you for your useful comments. I did see an eye specialist at A&E..they were caring and thorough...put in anaesthetic to both eyes, I also told them I had PMR (this did not receive a response). I saw my optician last week as my eyes were unfocused. He said that all was normal and no change in last 6 months. However, I do have cataracts but not operable yet.

I have put up to 13mg from 12mg and see how that goes for a day or so..if not up to 13.5mg. You realise just how strong this drug is when you see how little makes so much difference.

[SheffieldJane]

PMRPro’s advice is exactly what I would do. Doctors just don’t think outside of their specialisms. This is a bad infection that got a hold because of your compromised immune system and PMR always joins in.

[Pmrmolly2018 in reply to SheffieldJane]

Thank you for your response...all so helpful and nice to know that others are also in this same ‘leaky’ boat’....seems keeping it afloat is a constant bale out!

[Marilyn1959 in reply to Pmrmolly2018]

Hi PMRmolly, I was diagnosed at docs with conjunctivitis two weeks ago. Last week went back since eye drops hadn’t’t made any difference. Officious nurse gave me second lot of same drops! By Wednesday eye streaming, itchy forehead, light sensitive and sight impaired. Followed PMRpro’s suggestion and saw optician Sunday who contacted hospital eye department and I got a same day appointment. Turns out I have ulcers under eyelid caused by herpes virus (similar to cold sores specialist said). Being treated with Zovirax

And have a follow up appt at hospital in a fortnight.

And the moral of the story, any problems with eyes see an optician, since GP does not have Specialist equipment, so much is ‘best guess’ on their part. Have to say £20 consultation with optician and access to NHS Specialist straight away represents excellent value for money in my book.

[PMRpro Ambassador in reply to Marilyn1959]

And I DO hope you will make sure said officious nurse gets the message! It is all very well having nurses doing prescribing after suitable training BUT they must know when they are out of their depth - and she was in over her head.

[Marilyn1959 in reply to PMRpro]

Thank you so much again for your invaluable advice PMRPRO. And yes I will be contacting surgery since they were going to do swab test this week. I have left a message with Rheumy, whom I haven't seen for a year and GP who was supporting PMR management left about three months ago. I am concerned about the number and frequency of infections I am having, jaw, three (or one very persistent )UTI and now this all in the last four weeks, two months after trauma of replacement shoulder ball joint following fall. Very symptomatic of trigger for PMR diagnosis in June 17. I have stuck with my 7mgs Pred throughout, but am wondering if I should increase. Problem is a blood test at present is likely to be elevated because of infections. It is hard to know what to do for the best.

[PMRpro Ambassador in reply to Marilyn1959]

In view of all that - I'd say you need more pred. You are in the realms of adrenal insufficiency and most endocrinologists would suggest you need more to deal with infections. Infections also trigger flares of PMR because the immune system is thrown into turmoil again - and flares need more pred. Never mind blood markers - symptoms count here.

Have you seen the threads about using D-mannose for UTIs?

[Marilyn1959 in reply to PMRpro]

Have looked at D Mannose, but am concerned re constipation which is a major issue already. Though the reviews are extremely positive. Will discuss with GP. I did ring Rheumy yesterday and they have rang with a cancellation for today. Have to say NHS is really responding speedily to my plight at present. Will let you know what Rheumy says.

[PMRpro Ambassador in reply to Marilyn1959]

Think the opposite is more likely with D-mannose - as with many such sugars.

[Marilyn1959 in reply to PMRpro]

Oh. Just came across several reviews on webmd that mentioned constipation.

Went to see Rheumy. He upped pred only by 0.5mgs to 7.5mgs. Since discharge letter mentions Osteoporosis in shoulder he wanted me to consider AA again. I told him a definite no. He has suggested a yearly injection of ?????? However I questioned side effect of the drug which is known to cause osteonecronosis of jaw. He said it is very rare, but I reminded him that I have already had two ops for crumbling jaw. It would also be likely that I would have to have my remaining teeth out. He asked me to check state of affairs with dentist prior to my next appointment with him in April. He is arranging for a cimparison dx scan to inforn decisions.

He is writing to my doctor to ask for long term antibiotics to prevent UTIs. He wants me to proceed with the 'block injection' pain relief in base of neck which has to be scan led since it is near to spine and he wants me off pred (in his view my problems are down to being on pred) asap with a view to reduce by 0.5mgs every three weeks.

This is opposite to what I was expecting since with all the infections I am becoming symptomatic of when first diagnosed with PMR.

Your thoughts?

[PMRpro Ambassador in reply to Marilyn1959]

If it were me I think I would want a second opinion - that is all rather drastic! And nothing would get me to reduce pred at that rate without having had a synacthen test for adrenal function under the care of an endocrinologist. No doubt he also thinks secondary adrenal insufficiency is rare too? But the experts feel it is far more common than thought.

[Marilyn1959 in reply to PMRpro]

Sorry what is meant by secondary adrenal insufficiency? I thought adrenal function tests needed to be done at around 5mgs? Would thete be any value in my having one done now? Been on 7mgs for months with two failed attempts to get to 6.5mgs prior to Christmas and accident.

[PMRpro Ambassador in reply to Marilyn1959]

Primary adrenal insufficiency is when it is directly related to the destruction of adrenal gland function. Secondary is when it is related to the production of ACTH which stimulates the adrenal glands to work:

nadf.us/adrenal-diseases/se...

Many experts think there is no point in the synacthen test until you are down to 5mg - others accept the result is less informative and must be interpreted differently. What it does show is whether the adrenal glands are capable of producing cortisol at all - just one part of the equation. Whether normal service returns is only established once the dose is much lower and the glands start to produce cortisol.

Why did you fail to get to 6.5mg? There are two things in the mix now - PMR activity as well as adrenal function.

[Marilyn1959 in reply to PMRpro]

After giving it a week each time to taper (two occasions) early symptoms of PMR in back of thighs came back with stiffness in gait and also pain between shoulder blades. I was due to have scan led injection block, arranged by Rheumy to assist tapering) with shoulder pain before Christmas but had a UTI, so couldn't do prep for injection since I was taking antibiotics. I haven't been able to rearrange yet since I had accident and have had various infections since. It really is a nightmare at present. As soon as I get a handle on one thing, another infection rears! Ho hum.

[PMRpro Ambassador in reply to Marilyn1959]

Not at all sure that a block will help reduce the oral pred if the a/i part of PMR is still active.

[Marilyn1959 in reply to PMRpro]

You mirror my thoughts, which may also be why I was secretly pleased I had an infection when my appt for injection was due! I think I may ask for second opinion at my next Rheumy appointment. I am near Southend, so thought Gupta might be a good shout?

[PMRpro Ambassador in reply to Marilyn1959]

Possibly - or round the M25 to Chertsey!!

[Marilyn1959 in reply to PMRpro]

Yes Rod may be best shout.

[Marilyn1959]

Hi Pmrmolly2018. As you can see from the above sometimes having a Rheumy isn't an advantage! I have gone back to him as my GP who was helping me has left. However wondered if it might be worth you writing a new post asking if anyone can recommend a Rheumy local to you?