Depression strikes!

[Content1]

I've really tried to stay positive, but have lost it this time! Having got my Pred down to 5mg, suddenly last week headaches and jaw pain set in. GP increased dose to 15mg and all was fine for a week then pain started again. Have now increased to 17mg and headache has gone but lack of sleep has returned and general feeling of depression and self pity back! Feel like I am stuck on a spiral and can't get out. Weight gain is one of my problems and I wonder how I am ever going to sort this if I have to keep increasing the meds. PMR seems under control, it's the GCA that's causing me all the trouble. I know that I am blessed and have had my eyesight protected. Sorry to moan but I know that I am safe to do it on here!

[lesley2015]

Hi

Sorry to hear you are struggling- I seem to be In a similar situation so I know how depressing and frustrating it is.

The lowest in have got to is 8mgs and looks me you Went up a bit but needed to go to 17.5 to settle the gca. My weight had seemed to be going down but I am once again bloated.

Back down to 12.5 so taking my it steady.

Remember the preds depress us too - take a day at a time and be Kind to yourself. This is life changing and I find a constant struggle to adapt and accept.

But each day is one less overall 😉

[betty1943]

I really do understand and feel for you. But I gather from this site that we can overcome it, try and stay positive and keep on moaning, you know you are in 'good' company amongst people who really are supporting you. Do take time, however, to do something positive and whatever you do pace yourself quite firmly it's the only way. Good luck along the pathway.

[PMRpro Ambassador]

If this is GCA - why is your GP managing it? You should really be under a rheumatologist, especially when you are flaring like this.

You can help the weight gain a lot by reducing carbs in your diet drastically - there are a lot of people on the forums who have lost weight while still on pred (I lost 36lbs starting at 15mg pred) and others have avoided the weight gain to start with. It really is worth trying.

[Content1 in reply to PMRpro]

GP has managed it right from her diagnosis. Had biopsy which was inconclusive, but I had been on 60mg Pred for 3 weeks by the time I had it. What do you think would be the benefit of seeing a rheumatologist now? Thanks for the advice.

[PMRpro Ambassador in reply to Content1]

How long have you been on pred?

I wouldn't have mentioned it if you had had a positive biopsy and then simply reduced steadily and not had problems - but there are other things to consider and a specialist does know more than a GP about what is, when all is said and done, a serious systemic illness. I know doctors are a bit protectionist but I think all rheumies are agreed that a GCA patients should be seen by them and many feel even all PMR patients should be seen once (I'm not entirely sure I agree given my experience of a few rheumies) but any patient who has problems does need some specialist input.

[Content1 in reply to PMRpro]

I have been on Pred since Sept 2015. Started on 60mg and reduced very gradually. I see my GP every 2 to 3 weeks so I will discuss a rheumy with her. To be honest I have seen so many consultants over the past 2 years that the thought of another one isn't thrilling!

[PMRpro Ambassador in reply to Content1]

In that case - maybe give it a bit longer. That is barely 18 months and it isn't often GCA has gone in under 2 years. Most people I know needed pred for about 4 or 5 years with or without a specialist.

Have you had other problems at the same time then? I know the feeling - one specialist is bad enough, 2 is a pain and more doesn't bear thinking about!!!! I had that joy nearly 5 years ago - doesn't time fly when you're enjoying yourself!!

[Content1 in reply to PMRpro]

My problems have all come about since being on the Pred so my GP thinks that I have had some allergic reactions. (I do tend to react badly to many drugs). The worst is the loss of feeling in one foot and leg from knee downwards. Also developed gall stones, teeth problems, cataracts in both eyes etc etc! I do have confidence in my doctor. She is young and up to date and works with me! Thanks for your support, this thing really does get the better of you sometimes. I had thyroid cancer 10 years ago and had my thyroid removed and I thought that was it healthwise for me! Little did I know what was waiting round the corner hey!

[Marie1479 in reply to PMRpro]

Yes, I lost weight as well. My cholesterol increased 68pts 2 months after starting meds. I follow low carb diet and now cholesterol is normal. Lost over 20lbs since diagnosed. Sugar level at bay but higher than before Prednisone. I fight depression with meditation (Deepak Chopra has a great, free, guided meditation available online) , trying to continue to work (getting tough as I taper) and trying to stay positive. When I feel the tears coming I let them out and find I feel better. Getting outdoors in the sunshine is essential to mind and body as well. Handg in there, there is always a rainbow amongst the clouds. Hugs..

[Content1 in reply to Marie1479]

Thank you for your encouragement, good to hear someone else has leaky eyes!! Never imagined I would be the woman I now feel and long for the old me to return!

[Janll in reply to Content1]

It is difficult NOT to get depressed when you are in pain and/or frustrated. When I've also had an interrupted nights sleep I fight the tears all the next day. Life just doesn't seem fair! But there are PMRGCA survivors, lots of them. Love yourself, spoil yourself, rest and just possibly you will feel a bit better. As much as I HATE feeling poorly, these conditions are temporary, thank God, and tomorrow just might be brighter for you. I hope so. xxx. Jan

[Tonylynn]

So if the GCA has returned why are you not back on a high dose of steroids. My understanding is that the dose required should be no less than 0.75mg per kg of body weight. Who told you that your eyesight is now protected?

[Ronnie101 in reply to Tonylynn]

That's interesting. Ive not seen that referred to before. Is that guidance published?

[PMRpro Ambassador in reply to Ronnie101]

rheumatology.org.uk/include...

These are the old guidelines from 2010. I don't know if the new ones have been published yet - Dasgupta gave a lecture on them last autumn at the Scottish PMRGCA conference in Glasgow - so I don't know if it remains the same. For example, I believe the recommendation for the use of low dose aspirin it being removed as there is no evidence it justifies the risks associated with using it.

[Tonylynn in reply to Ronnie101]

Look at the "BSR BHPR Guidelines for the management of giant cell arteritis" under "Management of GCA" is for "Uncomplicated GCA (No jaw or tongue claudication or visual symptoms)" and there is .... Prednisalone 40-60 mg (not < 0.75 mg/kg) daily until resolution of symptoms and laboratory abnormalities.

The papers quoted are 1991 and 2002 and I understand the guidelines are 2010 .... has anyone seen anything later.

[PMRpro Ambassador in reply to Tonylynn]

"So if the GCA has returned why are you not back on a high dose of steroids"

The usual recommendation by many rheumatologists is NOT to return to the original high starting dose unless there are visual symptoms. it is to return to the last dose that worked to control the symptoms.

The BSR recommendations from 2010 say to return to the last dose that worked UNLESS there is headache AND jaw claudication or visual symptoms when 60mg should be used.

[Tonylynn in reply to PMRpro]

Just shows how opinions differ. Our consultant rheumatologist was of the opinion that if the symptoms returned my wife should go straight back to 60mg !!!!

[PMRpro Ambassador in reply to Tonylynn]

I don't need to see - I already have met so many opinions about PMR and GCA I could set up a shop selling them!!!!

[Ronnie101 in reply to PMRpro]

My biggest difficulty with all this is not the nature of the symptoms per say, but their severity and how long they last. Would a mild headache combined with a little intermittent jaw discomfort require an immediate significant increase in steroids? Or can one afford to "wait and see"? I guess there is no right answer except better to be safe than sorry.

[PMRpro Ambassador in reply to Ronnie101]

I don't know although a few rheumies I know feel that 15-20mg is enough for most possible GCA. If it isn't you are very likely to know because the symptoms will break through that sort of dose.

I had jaw claudication for some time and scalp pain for about 3 or 4 weeks during the 5 years I had PMR without pred. I spoke to the opthalmologist who worked with the GCA patients at Gateshead and she said she had never heard of it going away on its own. But go away on its own it did! I never had any visual symptoms but I (and a few doctors) all believe I almost certainly had GCA somewhere. When I started 15mg pred - EVERYTHING improved!!!

[BonnyQuine in reply to PMRpro]

Thanks. Have noted this.

[Cobnut]

I have had GCA for 21 months now and like you I was down to 8mg of Pred. Last October I started having a tender scalp and tingling pain in my head. I very slowly increased the dose expecting it to get better the higher I got but it didn't. I eventually reached 40mg and felt really depressed, fatigued and generally unwell. As my consultant had left me without blood tests and an appointment for six months I went along to a GP who said I should not be on a high dose for long. Bearing in mind that I also take Mycrophenolate alongside Predisilone I did not know which path to take next. After one more visit to a different GP and still on 40mg I was desperate to see a consultant at the hospital. I am attached to the renal clinic in Shrewsbury Hospital and I saw the doctor at the end of February who also does not know if my symptoms are GCA or something else. I was told to reduce to 10mg over two months and I am now down to 23mg but the symptoms are no different despite the Mycrophenolate dosage being increased. I would be interested to hear if anyone else has had these symptoms and what they may be. The soreness in the scalp is worse at night and its quite uncomfortable to sleep. There is a suggestion that it is neuralgia. I know this does not help you with your problem but it does illustrate that sometimes what you think is GCA rearing its ugly head again may not be the case.

[Ronnie101 in reply to Cobnut]

I completely agree. I'm yo -yoing between 20 and 30 mg pred because I don't know whether the symptoms I'm experiencing are to do with GCA (diagnosed 2 years ago) or the side effects of pred - cataracts, high eye pressures, acute angle glaucoma, slightly blurry vision at times, slightly aching neck, jaw and pain around the eyes - nothing which is debilitating). I THINK, but not absolutley sure, it seems to get better if I increase the pred, but I wonder if it's psychosomatic...? My consultant is hopeless - he just keeps saying my bloods are fine and I should keep on reducing the pred.

Just to say you're not alone!

[Jackoh]

Been lots of comments but just to add my twopence worth!! I had reached 10.5 mgs of Pred when I developed what I felt were GCA symptoms-a searing, excruciating boring pain in one side of head, pressure and pain at the base of the skull , pain at the side of the throat leading into the ear, and pain on the top of the head. GP said it wasn't GCA because the temporal artery was not affected. I went to see a Consultant, Dr Hughes, privately, because my GP didn't believe me and the Consultant diagnosed cranial GCA. Before seeing him I had gone from 10.5mg to 21mg, which controlled the GCA symptoms. Dr Hughes does not feel it is necessary to go any higher than this and I respect his professional opinion.

Also as PMRpro says really going up on steroids doesn't necessarily mean really going up weight wise. I haven't lost any weight but I haven't put on weight either and try as much as possible to stick to a low/ more of less zero carb diet with plenty of fish, chicken, salad, green veg , yoghurt, cheese and a small amount of red fruit with toasted almonds on yoghurt at breakfast.

I know from experience it is so frustrating and upsetting to have to keep upping the dose but it's more debilitating and dangerous just trying to put up with the pain. Also having found it fairly easy to reduce down to 10.5 with the PMR symptoms I have found it very difficult, after now nearly a year, to get down any further than 19mg and still not feel well. I have now this week started leflunomide. I say all this to show really that sometimes it can be a roller coaster ride and we have to try, not always successfully or consistently, to ride it. "These things will pass!". X Jackie

[Meg1711b]

When I hit a real low point after tapering nicely and then hitting a major flare-my rheumatologist suggested LDN low dose naltrexone. It can help with mood and pain. I found it very helpful. It does have to be made up for you specifically at a special pharmacy because it's not regularly used at such a low dose. I think mine was 4.5 mg.

With chronic conditions where we are doing ok for several days or weeks and then suddenly tank for no apparent reason-it certainly does take a toll emotionally from time to time.

You are normal, and you are not alone.

Hug. And hope your spirits are lifted up again soon!