Cold mucus cough

[Phed]

I was diagnosed with GCA in August 2019, and have had my first cold since I started taking the medication for it, I have never in my 69 years of life been reduced to spending time in bed with a cold, the cough that is accompanying it is horrendous and because I seem to be coughing so much day and night it has started to bring on the headaches again, never quite sure what to hold when coughing as head and ribs both hurt so much, has anyone else experienced colds being so much worse since taking medication for GCA?

[Purplegma3]

Yes, I caught a cold shortly after I was diagnosed with GCA. It took me a full 2 weeks to begin feeling better. I've always been able to spend 1 day at home and then I'd be back on my feet. This is very distressing for you I'm sure. I, too, am soon to be 69. Hoping you will soon be feeling much better.

[Phed in reply to Purplegma3]

Thank you for your reply, I just can’t believe how taking medication for GCA can make a cold feel so bad, I had the Flu injection back in October thinking that would help me to keep any infections going round away, what makes it worse is we avoided any friends coming to visit us with cold so I thought I would be pretty safe from colds this year. How long have you been suffering with GCA?

[Jane-s in reply to Phed]

I seem to have just the same cold and horrible cough which took me to bed for an hour yesterday. In fact I sneezed so hard 2 days ago it seemed to damage my hip joint.

Now my chest and hip hurt. But I still have to take the dog out and decorations down. Hey ho, maybe next Christmas I’ll feel better!

[Phed in reply to Jane-s]

Luckily we haven’t got a dog to take out as I haven’t got the energy to do it at the moment, I have spent a couple of days in bed getting up yesterday feeling so much better and today well I feel like I’m back to square one with the coughing the trouble is when I cough I don’t know if to hold my head or chest as both hurt so much, the only good thing is I have no appetite what so every so hopefully I will lose the few pounds I have put on by taking the steroids, hopefully we will both feel better soon.

[Purplegma3 in reply to Phed]

I was diagnosed in August of this year. I'm afraid it's going to be a long road.

[Phed in reply to Purplegma3]

Thank you for your reply, I thought I was coping quite well with my GCA cutting down on my steroids as advised, then caught a cold (maybe a virus) and it has really knocked me for 6 spent 2 days in bed which I have never done before when feeling ill, so many of the old GCA symptoms returned I have been advised to return to my previous dosage of steroids so I guess it will take me a bit longer now, I’m still feeling very positive about it all just annoyed that I have had a set back especially as we avoided every one that wanted to visit us that wasn’t feeling to good.

[PMRpro Ambassador in reply to Phed]

Having to go back up a bit because of a flare due to being otherwise unwell doesn't necessarily add to the total duration of the illness, it may just be a short blip. But GCA, like PMR, will last as long as it lasts and that varies widely - I know people off pred in 2 years and I know far more who took 4 to 5 years. It isn't a case of taking a dose of pred that cures the illness and then tapering off - you are looking for a longer term but lower dose that is enough to manage the ongoing daily dose of new inflammation in the meantime.

It is easy for me to say, I know, but there is no point wasting energy in worrying about how long this will go on, whether having to go up the dose a bit slows your recovery - use it to learn to live better WITH GCA rather than longing for a future date without pred.

[SheffieldJane]

This sounds like more than just a cold. You may have developed a chest infection. Our immunity is compromised so some infections can run rampant. Perhaps your doctor would consider antibiotics in these circumstances?

[Phed in reply to SheffieldJane]

I can’t believe how lucky I am and have just managed to book an on line Doctors appointment for tomorrow which is very unusual, I also have an under Active Thyroid so with GCA as well so I guess I have a double immune problem ☹️

[PMRpro Ambassador]

I actually find they are BETTER since taking pred!

However - it may not be the pred but the GCA, or at least the underlying autoimmune cause of the GCA which is making your immune system malfunction. The pred only relieves the inflammation, it does nothing for the actual disease process which chugs along in the background and upsets how our immune system functions in other situations too.

The flu vaccine doesn't protect you from everything viral - just the specific strains it is created to work against. Viruses can mutate very quickly and that is what makes creating a vaccine so difficult. There does seem to be a very aggressive cold and chest virus circulating this year - all over the world. My younger fitter neighbour has had it for 2 weeks and I can still hear her coughing and spluttering - she is very kindly avoiding any contact with us as it would certainly land OH in hospital if he got it!

[Phed]

You are so lucky to feel better with colds since taking the Pred, I was diagnosed with an Under Active Thyroid many years ago so I guess I have a double immune system problem, I have had it for a week now and finding it very hard to cope with , also I’m concerned that some of the symptoms are just like the start of GCA again and the thought of the really severe headaches coming back frightens the life out of me, I guess if your younger fitter neighbour has had it for 2 weeks I still have a way to go🙁

[PMRpro Ambassador in reply to Phed]

How far have you reduced the dose? It might be worth trying a bit more to see if that helps the headache - your deranged immune system may well be flaring in the context of GCA. The trouble is, the pred may be suppressing other bits of it so you can't fight the infection as well!

[Phed]

I am on 10mg at the moment and due to go down to 9mg on Wednesday, I have managed to get a Doctors appointment for tomorrow and that was one of the questions I was going to ask them if it would be a good idea to up the Pred,

[PMRpro Ambassador in reply to Phed]

You are getting close to adrenal function territory and anyway your body probably won't be producing extra cortisol to deal with the stress of being ill. A bit more might be advisable ...

[Phed in reply to PMRpro]

I never realised how debilitating GCA could be, I thought once diagnosed and on medication I would be on top of the world, it’s something I need to read up on to understand it a lot better, I’m not sure that even the Doctors know much about it at my surgery as one of our Doctors I saw asked a young training Doctor that was sitting in on my appointment if it was a virus, the training Doctor was horrified that he didn’t know anything about the problem and immediately took over from him, the trouble is it took 7 Doctors 3 weeks to decide what was wrong with me, so I have lost a bit of confidence in the Doctors, I will say this site is so helpful as people know exactly what you are going through and are always willing to help out with advice which is very much appreciated, otherwise I would feel so isolated with this problem as I don’t know anyone else with it, even when I go to see the Consultant at the hospital it’s only ever me in the waiting room so I guess there can’t be many people in my area with the problem.

[PMRpro Ambassador in reply to Phed]

Yes - lots of doctors are in the same state, believing once you are on pred you are back to normal with never a thought that the disease is still there, the pred itself has its own baggage and effects. I hope he was suitably abashed and all power to the young GP. At least it shows they are learning something about it.

[Phed in reply to PMRpro]

She certainly did put him in his place with my problem let’s hope he went home and studied a bit more on GCA so the next person that goes to see him with the symptoms doesn’t have to wait so long for a diagnosis, I had an eye test just before Christmas and the Optometrists even knew more about it than the Doctors (He had worked in A & E department), I didn’t tell him any of my symptoms he told me instead and he was spot on with them.

[Marijo1951]

For the first time since Boxing Day, I slept through last night without waking up with a tumultuous coughing bout. I'm just getting over a horrible phlegmy cold and a terribly painful cough which I was scared might be bronchitis - plus wheezing, noisy breathing, stupendous sneezes and mountains of damp tissues. I don't think it had anything to do with PMR or GCA as so many other people have gone down with what is evidently the same virus. I did stop taking my methotrexate for two weeks to help the immune system do its work.

[Phed]

I can’t remember the last time I slept through the night since taking Steroids, the trouble with the cough it’s so painful at night especially under the ribs trouble is I can’t just come of the Steroids, I’m going to the Doctors tomorrow for a check up as I did wonder Chest Infection,

[Marijo1951 in reply to Phed]

I know what you mean. When I was on higher doses of pred I suffered terrible insomnia every night. I'm down to 6 mg now and sleep most nights with maybe one bad night in ten. The coughing fits meant that I did wake up for about 10 nights in a row, but it wasn't like pred-induced insomnia.

[Phed]

I’m currently on 10mg Pred due to go down to 9mg on Wednesday, it’s good to hear as the dosage gets lower I will hopefully be in for a good nights sleep, I’m going to check with the Doctors tomorrow if I should cut down to 9mg on Wednesday as I seem to be getting headaches once again just like when I had the symptoms for GCA not sure if it’s where I have been coughing so much thought or being tired.

[PMRpro Ambassador in reply to Phed]

I wouldn't be reducing the dose until you have recovered from the infection - that is just asking for trouble and tempting a flare.

[Phed]

I did think that would be the best thing to do but didn’t want to do it with out asking advice first as I certainly don’t want it to flare up like it was before I was diagnosed with GCA,

[KellyInTexas]

Texas has succumbed to bubonic plague. “ Bring out your dead...”

(Influenza A as well as influenza like illness ( ILI ) are being reported to CDC in Atlanta in very high numbers right now. Our town is still peaking. )

My doctor(s) are telling me to wear a surgical mask in the shops now due to it. I’m on pred and Rituximab.

Because I’m on warfarin ( at high intensity) I can’t really take any medications for fever or congestion- and very few antibiotics. I’m very limited on help though illness. I’m a neurotic mess right now...😂😩